Sara Bean

Age 9, North Carolina

Meet Sara Bean. Please don’t be fooled by the serenity in this picture, Sara Bean has an unending supply of inquisitive energy. She is her happiest self when she’s outside playing in the dirt, water or, even better, both! She is captivated by nature and wants others to share in her enthusiastic exploration. If you’re looking for help in babyproofing your home, she is well equipped to point out the weak spots. She’s also kind, endearing and empathetic.

She was born just one minute after her twin sister, Emma, at 28 weeks via emergency c-section. Her bold personality shined through, even in her early days in the Neonatal Intensive Care Unit (NICU). She needed heart surgery when she was two weeks old and weighed two pounds.

As an elementary school student, she lives with epilepsy, a speech delay and global developmental delay. She is making good progress in virtual learning and school-based weekly therapies since the beginning of the COVID pandemic, although we’re all looking forward to being able to safely return to in person learning and friends.

Submitted by Sara Bean's mom, Stacy

Claire

Age 9, Alaska

Meet Claire. She loves her dogs and meeting people.  A social butterfly with no fear. Lots of hugging for everyone.  Most well-known child advocate in the state.  Loves music and dancing.

Claire is a trauma survivor - completely blind, seizure disorder, severe developmental delays and mental health complications due to child abuse and attack at 3 months of age.

CURRENT MEDICAL NEEDS:  Speech therapy, OT, PT, psychiatrist, medication, neurological care for seizures, compromised immune system, behavior management, aides for blindness

WHAT DOES ACCESS TO AFFORDABLE QUALITY HEALTHCARE MEAN TO YOU?  Funding for the services necessary for Claire to receive and still live at home.  She is a child who would require nursing home level of care without these services.

HOW HAS THE ACA AND/OR MEDICAID HELPED YOU?  Saved her life!  Without Medicaid and services available, she wouldn't be able to speak or walk. Couldn't go to school or have friends and live with her adopted family who adores her. She would have died or been institutionalized (worse).

HOW WOULD MEDICAID CUTS AND/OR ROLLBACK OF ACA PROTECTIONS AFFECT CLAIRE?   Funding cuts would reduce services and states would be forced to cap the amount of money allocated per recipient; prescription coverage is considered optional!  Her meds are $7K per months; without them her seizures would require her to be hospitalized at last daily - seen through the ER.

Claire is an amazing child who inspires others daily by overcoming her challenges, and helps her grandmother advocate for all disabled children in Alaska.  She is at protests, rallies, political functions and regularly appears before the State Legislature.

Video about Claire: //vimeo.com/234104193

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Submitted by Shelly, Claire's grandmother

Elliott

Age 4, Maryland

Meet Elliott. Elliott loves seeing new people and new things, and is always up for an adventure. He enjoys reading books, going outside to play, dancing to music, and going for walks in his gait trainer. Elliott absolutely loves school, where he is very social, greeting his teachers and the other students. He loves to count, knows the alphabet and can spell his name, and is learning about weather! His IEP allows him accommodations for his mobility devices, extra therapy for vision, PT, and OT, and additional time to eat. Elliott was born with esophageal atresia and had surgery to correct it when he was one day old. He spent over eight months in the hospital during his first two years for surgeries to repair his trachea and esophagus, to deal with intestinal complications, and for numerous bouts of pneumonia. He has cerebral palsy and uses a wheelchair and a gait trainer to explore his world.

Elliott's mom Caroline says: “Elliott's medical care during his 3.5 month NICU stay would have exhausted his pre-ACA lifetime caps. The Affordable Care Act has allowed him to access high-quality medical care without a lifetime limit, covering critical surgeries which allow him to eat by mouth and recover from a simple cold without hospitalization. Today, he is just a regular kid who needs physical therapy and accommodations to access the things that most people take for granted. ACA-repeal would mean no access to mobility equipment, like his beloved gait trainer or his wheelchair, and no coverage for physical and occupational therapy. Elliott has worked hard for his current level of mobility, and deserves access to hospitals and doctors, no matter his medical requirements.”

Submitted by Elliott's mom, Caroline

Zander

Age 10, Virginia

Meet Zander. Zander loves music and playing the piano, recorder, and drums. He is learning to read, understand, and speak Spanish using his PRiO communication device and got several bilingual “Jorge el Curioso” books for his birthday! He’s an adrenaline junkie and loves roller coasters, riding his adaptive bike, and adaptive skiing with Blue Ridge Adaptive Snow Sports. Zander also has spastic quadriplegic cerebral palsy, cortical vision impairment and optic nerve hypoplasia, sialorrhea, and apraxia of speech. Zander uses a wheelchair get around and the accommodations mandated by the ADA allow him to access his community like other kids. At school, Zander gets the speech, occupational and physical therapy he needs as well as an aide to help him access his educational environment.

Zander’s mom, Jessica says: “We are a military family who rely on Tricare, which is the gold-standard for health care for kids with special needs in our country. All of Zander’s many therapies, equipment, surgeries, and medications are provided by military treatment facilities when available and covered by his insurance 100%. But, children who are lucky enough to be born to active duty service members should not be the only children in this country entitled to the care they need to live full and healthy lives. And, we shouldn’t have to worry about what will happen to our son when Tricare will no longer cover his care or when my husband is discharged. This should be a right of all children. If it wasn’t for IDEA, Zander would have to stay home, cut off from his peers and services. Because of IDEA, my son has access to friends and a quality education and I was able to get a doctorate degree and work in pediatric physical therapy to help not only my son, but other children with physical disabilities.”

Submitted by Jessica, Zander’s mother

Simon

Age 14, Maryland

Meet Simon. Simon has a great sense of humor and the best laugh you’ve ever heard. He loves music (especially the drums), the Muppets, playing Mario Kart with his big sister, and hanging out with his Little Lobbyist friends. Simon had a stroke in utero which caused diffuse brain damage, cerebral palsy, hydrocephalus, and a rare form of epilepsy. He had his first brain surgery at only 2 weeks old to place a VP shunt. A few years ago, Simon began losing vision, hearing, cognitive ability, and gross motor skills. After lots of testing his family learned he has a unique genetic disorder with an unknown prognosis. Simon's current needs include: medications, medical equipment, frequent appointments with various specialists, surgeries, neuropsychological evaluations, specialized education, and multiple therapies.

Simon’s mom Laura says: “The Affordable Care Act is an incredibly important piece of legislation for my family’s well-being. As a small business owner, I rely upon the the ACA’s insurance marketplace to purchase health care for my entire family (all of whom have pre-existing conditions). Through the ACA’s Medicaid Expansion, Simon is also able to benefit from a Medicaid Waiver, after being on a waiting list for 10 years. Simon’s Medicaid Waiver not only helps him access the health care he needs (which my family has struggled to afford), but it provides home and community based services so Simon has the supports he needs to be successful in his own environment as he grows into adulthood. It’s not hyperbolic to say that Simon’s life, future, and freedoms rely on Medicaid’s support.

In 2018, Simon was selected to participate in NIH’s Undiagnosed Diseases Program. Through this program, we were able to learn more about Simon’s condition and help to advance the science of genetic medicine to benefit everyone. At NIH, having the opportunity to see truly collaborative and coordinated research and care unencumbered by the frequently arbitrary limitations of insurance has been a revelation – I feel like we’ve gotten a glimpse of how incredible our country’s health, science, and technology could be if we fully invested in it as a nation.”  

Submitted by Laura Hatcher, Simon’s mother

Ethan

Age 6, New Hampshire

Meet Ethan. Ethan is incredibly joyful and communicates in the most amazing ways. He loves to sing, read, and play outside with his brother. He loves Disney (especially visiting the theme parks!), enjoys adaptive skiing, bike riding, football and basketball. Ethan also has Joubert Syndrome and other related disorders, Dandy Walker Malformation, Tetralogy of Fallot, and Hydrocephalus. He experiences feeding difficulty, orthopedic challenges, low muscle tone, and respiratory issues.   

Ethan’s mom, Anastacia says: “Cuts to Medicaid means Ethan’s feeding pump, formula and supplies are not covered. Having Medicaid means his appointments with specialists are covered and that he can utilize the hospital when he needs to. Ethan losing protections for existing conditions means that his feeding supplies and most, if not all, of his medical equipment will not be covered by our private insurance.Healthcare needs to be a right – not a privilege.”

Submitted by Anastacia, Ethan’s mother

Lulu

Age 5, Oklahoma

Meet Lulu. Lulu can find a worm just about anywhere. She loves her chickens, exploring, and belly laughing. She wants to live on Saturn, and thinks everyone should know the red spot on Jupiter is a big storm. Lulu is also missing 9 genes on her 16th chromosome (one of only 3 known children with this chromosomal deletion). She has seizures, motor and developmental delays, frequent vomiting and sleep disruptions. She uses a tube to get her nutrition and needs therapies to gain strength and skills.   

Lulu’s mom, Jessica says: “Without Medicaid as secondary insurance we cannot afford Lulu’s formula, therapies, hospitalizations, and medications. Because of Medicaid, we are able to give her care in which she thrives beyond every specialist’s expectations, and we can save for her mysterious future. Lulu’s childhood care is threatened by anything undercutting Medicaid. I have no idea what to expect for her future if we lose that option, AND she isn’t guaranteed care because of pre-existing conditions. No one demonstrates that health care is a right more than a child with disabilities and medical needs. Especially when that child is hungry to learn and love her world.”

Submitted by Jessica, Lulu’s mother

Sam

Age 2, Massachusetts

Meet Sam. Sam is an active guy who loves climbing, jumping, playing catch, and watching football on TV with his dad. He also loves to snuggle and blow kisses, and will smile and say hi to everyone he meets. Sam was born with half a heart, and has many complex congenital heart defects that are summarized as single ventricle physiology. He will need close monitoring by cardiologists his entire life, and has already had three open heart surgeries.   

Sam’s mom, Jessie says: “Last year I was offered an amazing career opportunity which brought us back to Massachusetts and closer to family, but without the protections for preexisting conditions in the Affordable Care Act, I would not have been able to leave my old job and old health insurance. Sam’s most recent surgery required 16 days in the ICU, I cannot even begin to imagine what that costs without insurance. One of his many medications costs $15,660 per month! This doesn’t include the multiple chest X-rays and echocardiograms he requires at routine follow ups or the physicians bills. We’d be nowhere without the ACA.”

Submitted by Jessie, Sam’s mother

Anna

Age 8, Tennessee

Meet Anna.  Anna is a great reader. She likes to ride her bike and swim, and her brothers are her best friends. She loves unicorns and rainbows, dolls and stuffed animals. Anna has subglottic stenosis, tracheobronchial malacia and had a tracheostomy until 2018. She also has metabolic bone disease, arthritis and asthma. Anna uses a feeding tube to meet her nutritional needs and has an IEP at school to help her get the education and therapy she needs.

Anna’s mother, Angie says: “Losing the ACA caps on care means that Anna could lose healthcare with one hospitalization. Medicaid cuts mean that we could be one illness away from possible bankruptcy.”

Submitted by Anna’s mother, Angie

Jack

Age 9, Virginia

Meet Jack. Jack is funny, very creative, and an incredible big brother to three younger siblings. He loves to draw and sing, and is an amazing gamer (his favorites games are Fortnite, Among Us, and Roblox). Jack swims on his neighborhood swim team, belongs to his church cub scout pack, and takes great pride in being a Little Lobbyists Ambassador. Jack also has Cystic Fibrosis, Allergic Broncho Pulmonary Aspergillosis, Distal Intestinal Obstructive Syndrome, Exocrine Pancreatic Insufficiency, and Convergence Disorder.

Jack’s mom Tasha says: “The return of pre-existing conditions is the most terrifying aspect for me – my son has had a pre-existing condition since 4 weeks of age. He already cannot get life insurance; prior to the elimination of pre-existing conditions our options for healthcare were so much more limited. Why should an insurer be allowed to tell a child who was born with a condition that they are too much of a risk to insure? Neither I nor my son chose this for him; my government should be doing everything in its power to help me save him and children like him. They are important, their lives matter. They need to be given every opportunity to thrive and participate in every moment of their life just as healthy people do.

Jack was born prior to the ACA, he became sick and I had to take time off work. I had to take so much time off, we faced losing my job which provided our insurance. We couldn't afford COBRA. The likelihood I could get another job and re-insured was unlikely. We were lucky, my employer allowed me to work from home. If they had not Jack would probably not be alive today. Just his medications at that time cost $7,200 per month which did not include his clinic visits or other necessary therapies. Today, his medications average $400,000 per year. To keep my son alive, without insurance would cost me for medication ALONE, almost a half a million dollars per year. Even with insurance, without the ACA he hits the Lifetime cap in 2-4 short years. He will be 10.”

Submitted by Tasha, Jack’s mother

Natalie

Age 7, California

Meet Natalie. Natalie is smart, kind, outgoing, and funny. She loves to help others and has many friends at school. She enjoys cooking, drawing, and reading; her favorite books are the Harry Potter series. Natalie loves to swim, she has been participating in synchronized swimming since she was 3 years old. Natalie also has a rare brittle bone disease called Osteogenesis Imperfecta type 6 and has had over 30 fractures since birth. She needs surgeries and medications and uses a wheelchair to help her get around. At school, Natalie’s IEP provides her with the school-based services she needs to stay safe and be fully included academically and socially. 

Natalie’s dad, Joe says: “Natalie will need extensive, specialized care for the rest of her life from a multi-disciplinary team of endocrinologists, orthopedic surgeons, geneticists, and physical therapists.  Without access to care, Natalie's would lose her mobility and her quality of life would be lost. Natalie is a dual-national and when in Japan receives excellent care. The Japanese healthcare system is excellent and I hope that someday we get our own universal care system. I wish people here understood how powerful a national healthcare system can be. Imagine having access to any doctor in the country. Until then, the ACA is the closest thing we have to a healthcare bill of rights. Under the old, pre-ACA rules Natalie would be prevented from purchasing health insurance due to her pre-existing condition. Even if she could obtain insurance, she would most likely hit a lifetime cap and become uninsurable. The ACA ensures that Natalie will have access to the care she needs to pursue a happy, independent life of her own.”

Submitted by Natalie’s dad, Joe

Emma

Age 9, North Carolina

Meet Emma. Emma enjoys dancing to Elmo videos, playing with balls, and exploring outside in the grass. Emma is a twin born at 28 weeks, one minute older than her sister, Sara Bean. Emma lives with bilateral vocal cord paralysis (BVCP), global developmental delay, severe Reflux/GERD, and pulmonary disease from prolonged intubation. Emma has never taken an unassisted breath. She needs daily nebulizer medications and has a tracheostomy to help her breathe. She uses a g-tube for nutrition, therapies to gain skills and strength, and needs 24-hour care to stay safe. Home and community-based services (HCBS), including private duty nursing (PDN) mean that she can grow up and thrive with her family; in her home.

Emma’s mom, Stacy says: “Our private insurance will not cover Emma's in home nursing, a majority of her general and respiratory supplies and the frequent therapies she needs to make progress. Medicaid is covering that difference, which would be financially insurmountable if she were to lose it. The ACA and Medicaid mean we’re not drowning in debt to provide basic, life-sustaining care for my child.”

Submitted by Emma’s mom, Stacy. Read more about Emma in this Op-Ed written by her mom, "Hold Your Breath."

Landon

Age 10, Missouri

Meet Landon. Landon loves to get lost in a good book, singing, and is learning to play the violin. He also really enjoys video games, and wants to one day become a YouTuber, who does video game tutorials. Recently, he’s become aware of the threats to his healthcare and has used his voice to advocate for himself and others. Landon also has Severe Aplastic Anemia, and had a bone marrow transplant from an anonymous, unrelated donor on January 6, 2017. He has a weakened immune system and needs to take medication, get regular blood work, and is followed by an oncology team and many other specialists. 

Landon's mom Cheyenne says: "Access to affordable, quality health care means knowing that my child can see the doctors he needs, and get the treatments he needs without having to worry about whether insurance will cover it or not, or how we are going to pay. It means knowing he can get his medications without them being denied for not medically necessary by our insurance company, even though they keep him alive. Losing the protections that the ACA provides is terrifying. Right now, we have insurance. But what if we lost our jobs that provide that insurance? Or what about when he is a young adult and still needs to see his specialists but he can't get his own insurance anymore because his pre-existing condition means they can charge him whatever they want. Is he supposed to stop seeing those providers and stop getting the care he needs until he gets so sick there is no treatment? I think about it daily. And it terrifies me, as well as inspires me to do my part to make sure he never has to have those same worries."

Submitted by Cheyenne, Landon’s mother

Jude

Age 11, New Jersey

Meet Jude. Jude has an infectious smile and can make even the gloomiest people laugh with his giggles and glorious curls! Jude loves all types of music and enjoys watching and listening to football. He is a Pittsburgh Steelers fan (which broke his dad’s heart, since he’s a long time NY Giants fan!). Jude also has spastic quadriplegic cerebral palsy, epilepsy, cortical visual impairment, scoliosis, and global developmental delay. He uses a wheelchair to get around and a feeding tube for nutrition. Jude is nonverbal but always finds a way to let people know what he’s feeling. 

Jude's mom Denise says: "For our family, we MUST carry private health insurance in addition to Jude's Medicaid waiver. We can not access quality health care with the medicaid waiver alone. Many specialists that he needs to see don't accept the insurance provided through the waiver. With that being said, the medicaid waiver does cover most, if not all of the additional items that are essential to Jude's day to day survival. Jude requires 24 hour care and the waiver covers the cost of his private duty nursing (16 hours a day 7 days a week) which our private insurance will NOT cover. Our family would not survive financially, physically or emotionally without that help. In addition to his nursing the medicaid waiver offsets the cost of his medications and monthly medical supplies! Jude is one of the children considered to have a pre-existing condition, he will require 24 hour care for the rest of his life. He will NOT survive if there are caps on care or pre-existing conditions are a consideration."

Submitted by Denise, Jude’s mother

Malachi

Age 2, Washington

Meet Malachi. Malachi is a very happy guy. He loves books and music, especially classical and Irish folk/bagpipes. His favorite color is orange and he loves his toy giraffe. Malachi also has spina bifida, hydrocephalus, chiari malformation, gastroesophageal reflux disease, oral dysphagia, apnea, congenital heart disease, hearing impairment, developmental delays, and food allergies. He needs 24-hour skilled nursing care to stay safe and well, multiple therapies to learn and grow, and ongoing support from specialist physicians to meet his medical needs.

Malachi's mom Whitney says: "Malachi spent over seven months in-patient at Seattle Children's Hospital [after he was born] where he underwent five life-saving surgeries and an untold number of medical procedures. The cost of his initial hospitalization was in the millions. Without Medicaid as a secondary insurance policy, there is no way we could have afforded the cost of his care. Without the protections guaranteed by the ACA [Affordable Care Act], including protections for those with pre-existing conditions and no lifetime caps, Malachi would have a very difficult time securing any type of health insurance policy. Our family relies on the protections afforded by the ACA."

Submitted by Whitney, Malachi’s mother

Elliana

Age 3, Missouri

Meet Elliana. Elliana is full of sass and approaches every day as if she plans to conquer the world. She loves causing mischief with her twin brother Wyatt and singing songs at the top of her lungs. Elli is incredibly compassionate, she gives great hugs and always says "I love you" at just the right moment. Elli also has an ACTG2 mutation causing Megacystis Microcolon Intestinal Hypoperistalsis syndrome (MMIHS). She has weak smooth muscles in a number of organs, including her bladder, colon, and intestines creating digestive difficulties. Ellie has had many hospitalizations and operations and needs parenteral nutrition via IV for 12-18 hours per day.  Mild illness often causes her intestines to shut down and require hospitalization and a NG tube to decompress her stomach.

Elliana’s mother, Jessica says: “Elli has likely already met what would have been a lifetime cap in the pre-ACA days. I can't imagine a world without insurance for her. Our family's income is over the amount allowed for MO medicaid, so despite having good coverage, we are always under the burden of large medical bills. I don't want to know what life would be like if she didn't have the coverage she does.  Because we only have private insurance, we don't get any in-home nursing care and must do all of her care ourselves, which is a constant stressor on our family.  I dream of what having supplemental medicaid through a waiver would be like, and the additional personal and financial freedom it could bring us.”

Submitted by Jessica, Elliana’s mother

Gerard

Age 6, New York

Meet Gerard. Gerard is a sweet, happy and energetic little boy who loves singing, Sesame Street, Peppa Pig and electronic devices. Gerry loves school, especially the playground! Gerard also has Autism, ADHD, and serious food allergies. He takes medication and sees specialists to stay healthy, uses orthotics to help him get around, and needs therapies to build strength and skills.

Gerard’s mother, Nora says: “Repeal of the ACA would mean that his Dad’s (excellent) employee sponsored insurance would be under no obligation to cover necessary treatment. They could charge exorbitant premiums for a fraction of the coverage, if they would cover him at all. The ACA provides the protection my son needs to receive the treatment and services necessary so he can grow and thrive.”

Submitted by Nora, Gerard’s mother

Scarlett

Age 9, California

Meet Scarlett. Scarlett is a snuggle monster, an instant hugger and quick to say how much she loves you. She loves music, playing pretend and dress up, riding her bike and scooter, and being pulled in the wagon. She is a great big sister, always trying to find ways to help. Scarlett was born with a congenital brain tumor and needed several surgeries and 2 years of chemotherapy. A stroke and damage from the tumor caused developmental delays and disabilities impacting her vision, speech, swallowing, mobility, and cognition. Scarlett uses a wheelchair to help her get around, needs behavioral support and therapy to help her gain strength and skills, and follow up testing to monitor for tumor recurrence.

Scarletts mother, Brandi says: “We have battled for her access to health care since she was first diagnosed. Before she was accepted into Medi-Cal life-saving medications were denied; we had to ask for donations and hospital sponsorship to afford some of the chemotherapy and recovery medications. We wracked up over $5 million in medical costs before she was 3. With her current state-provided medical coverage, we can see the best doctors in the area and receive treatments as she needs them, not when we can afford for them to happen. Medi-Cal, CCS and Regional Centers, along with an IEP at school, have helped us to create a full-scope program for her health and safety. We still have therapies we need to hunt down, long waits for some providers and roadblocks to treatments that would help her live a better life; it is a never-ending process that changes every time she does.”

Submitted by Brandi, Scarlett’s mother

Jackson

Age 4, Pennsylvania

Meet Jackson. Jackson loves being outside, outback on our swing set or at the lake with his family. He also loves meeting new people, and playing with his little sister, Millie. Jackson has Coffin Siris Syndrome, a rare genetic disorder that causes multiple medical conditions, including: congenital heart disease, sensorineural hearing loss, visual impairment, and global developmental delays. He was also born with Pierre Robin Sequence and has an undersized jaw and cleft palate. As an infant, Jackson had necrotizing enterocolitis, and at 7 weeks needed a portion of his intestines removed causing short gut syndrome. Jackson uses a tracheostomy to breathe and a wheelchair to get around. Having accessible spaces allows him to be part of his community, and he loves visiting parks and playgrounds. His family feels lucky to have a wheelchair accessible playground nearby that he loves! 

Jackson’s mother, Ashley says: “We’ve been lucky to have employer health care, but it doesn’t cover anywhere near all of the services and supplies Jackson needs to stay at home. Thanks to his Medicaid waiver, Jackson has been able to receive home nursing and the necessary equipment for us to safely care for him at home. It also covers the expenses private insurance doesn’t, like physical therapy and mobility equipment, including Jackson’s wheelchairs that allow him to be independent and thrive. Within just a few months of being alive, Jackson’s medical care cost well over one million dollars. He had six major surgeries in seven months before ever leaving the hospital for the first time, and spent the majority of that time living in an ICU. Since then, he’s had over half a dozen more surgeries, but our family has never had to decide between paying for his care or paying our bills thanks to his Medicaid waiver.”

Submitted by Ashley, Jackson’s mother

Caroline

Age 10, Virginia

Meet Caroline. Caroline is full of love and energy; she is bright, funny, observant, and engaged. She enjoys listening to Disney songs, reading, and watching movies with her loved ones while snuggling on the couch. She loves Moana, Aladdin, and High School Musical – and her favorite actor is Zac Efron! Caroline also has Rett Syndrome and is non-verbal and non-ambulatory. She takes multiple medications and has a Vagus Nerve Stimulation (VNS) implant to control her seizures. She also has a g-tube for nutrition, uses a wheelchair to get around and needs daily lung therapies to help prevent hospitalizations.

Caroline’s mother, Marta says: “My daughter Caroline is alive because of Medicaid. The medications, equipment, and nursing care that have helped us manage her severe disability would not be possible without the federal program’s support.”

Read more about Caroline in this article written by her mom, Marta Connor - "Medicaid Fulfills Crucial Role for Children with Special Health Care Needs Like My Daughter."

Danny

Age 8, Kansas

Meet Danny. Danny loves to be on the go! He enjoys being with friends and family, talking on the phone, and most recently - he loves Zoom calls! Danny is a happy third grader and is learning multiplication and division. He loves to read books, especially Junie B. Jones and books about space. Danny is interested in nature, going on walks, and being outside. Danny has cerebral palsy, epilepsy, optic nerve hypoplasia, and cortical vision impairment. Danny uses a g-tube for nutrition and fluids, a wheelchair to get around, and needs total support for personal care. He takes numerous medications to control his seizures and follows a specialized diet for epilepsy.

Danny’s mother, Laura says: “Access to affordable health care is everything toDanny and to us. Danny requires a dozen daily medications and nutritional supplements, weekly therapy, and routine medical care from his neurologist, epileptologist, orthopedic surgeon, Endocrinologist, and ophthalmologist. He requires adaptive equipment, a communication device, and feeding tube supplies. While he has employer based coverage, he is protected by the ACA’s elimination of lifetime caps. Danny’s care is expensive, and he certainly would have far exceeded these caps already.”

Submitted by Laura, Danny’s mother

Daphne

Age 16, Maryland

Meet Daphne. Daphne loves listening to music, splashing in the water, visiting parks and gardens, and spending time with her family and friends. She enjoys getting complimented on her beautiful, red hair. Daphne has Neurofibromatosis (NF1), Moyamoya Disease, epilepsy, and coarctation of the aorta. She is trach/ventilator dependent due to inoperable tumors in her airway. Daphne uses a wheelchair and cannot sit independently.

Daphne’s mother, Jennifer says: “Because Daphne requires 24 hour care, she receives home nursing through Medicaid and Maryland’s REM program. Cuts to Medicaid would be devastating for us. Without ACA protections and Medicaid, Daphne would have no access to healthcare.”

Submitted by Jennifer, Daphne’s mother

Sullivan

Age 7 months, Colorado

Meet Sullivan. Sullivan loves to snuggle with everyone  (his mom says he's a snuggle bug). He just started smiling and is starting to enjoy tummy time. Sully also has a vascular malformation called the vein of Galen malformation which caused heart failure less than 2 weeks after he was born. Sullivan has also had multiple strokes which have impacted his peripheral vision and caused seizures. He spent the first few months of his life in the NICU, has needed multiple surgeries, and is currently accessing physical, occupational, speech and vision therapies to help him gain strength and skills. 

Sullivan’s mom, Melissa says: “Without the Medicaid Waiver, we'd be battling constantly with our primary insurance. The Waiver means that Sullivan can get all of the therapies he needs when he needs them - which is so critical while he's so young. While strokes can be debilitating for adults and even older kids, there is still a possibility to "re-wire" his brain while he is young to help him navigate around where the brain damage is.  We've already seen incredible progress from his therapies - he's about to roll over, he's able to reach and grasp for things, which doesn't seem like much, but is so important for him! Additionally, Sullivan has a g-tube and uses multiple meds, a special formula for the keto diet (which helps minimize his seizures) and a ton of equipment, like his feeding pump and oxygen tanks and refill machine. This is all made possible through Medicaid - I know we'd have to battle with our primary insurance for all of these things.”

Submitted by Sullivan’s mom, Melissa

Alice

Age 7, Massachusetts

Meet Alice. Alice loves to swim and has a great sense of humor. She loves to laugh and sing along with her favorite songs, including Hamilton, Z-O-M-B-I-E-S, Frozen, Pentatonix, and Ed Sheehan. Alice also loves school and uses a Tobii Eye Gaze communication device to communicate and learn how to read. Alice has HIE (Hypoxic Ischemic Encephalopathy), which caused Cerebral Palsy. She uses a g-tube to help her get nutrition and medication, a wheelchair to get around, and therapy to help her gain strength and skills.

Alice’s mom, Aimee says: “If we lost health insurance for Alice because she has a preexisting condition, it would be devastating. Even just losing her Medicaid would be devastating. Alice goes to outpatient therapy 5 days a week, the co-pays would be $150 every week! Alice also has a communication device, wheelchair, stander, gait trainer (in process), and an adaptive toileting seat which were all covered by insurance. Without these things, Alice’s quality of life would be greatly affected.”

Submitted by Alice’s mom, Aimee

Wyatt

Age 3, California

Meet Wyatt. Wyatt is a sweet soul. He loves any show with cute animals (Winnie the Pooh is his favorite), and he really enjoys being outside and spending time at the beach. Wyatt also has two duplications and one deletion in part of his 8th chromosome and the corpus callosum of his brain is missing. He spent his first 4 months in the hospital and has had multiple surgeries. He has hypotonia and is non-verbal. Wyatt uses a g-tube for nutrition and a wheelchair to get around.

Wyatt’s mom, Sherida says: “California’s Medicaid program is critical for us. Aside from Wyatt’s medical care, we are provided a certain amount of care and respite hours. This allows Wyatt to use a pediatric day care facility, and also allows us to work. We also have utilized CCS for PT and OT. We would not be able to afford his care otherwise. Wyatt has a wheelchair that will be his primary way of getting around. Access issues are most obvious when we go to the beach.”

Submitted by Wyatt’s mom, Sherida

Josephine

Age 4, Virginia

Meet Josephine. She could sit all day and have stories read to her. She loves puzzles, big trucks, swings, bubbles, a great playlist, and getting into trouble. Every day she grows into a more inquisitive and vibrant human being.

Josephine was born at 24 weeks gestation. She weighed 1lb 12oz and was 12 inches long. She has Chronic Lung Disease, Pulmonary Hypertension, and GERD as a result of extreme prematurity and low birth weight. She also has Postprandial Hypoglycemia from having a gtube with a nissen. For the first 3 years of her life she was ventilator dependent and she had a tracheostomy until July of this year, 2020. The tracheostomy and ventilator were critical in helping her grow stronger, larger, better lungs. Today she uses her gtube for fluids, and medications. She's globally delayed, has low tone, and needs orthotics. With hours and hours of therapy sessions and follow-up on  home she now walks, climbs, dances and likes to play outside more than anything. She speaks beautifully through the efforts of multiple speech therapists to teach her and her parents how to support her use of a speaking device. Through her Accent 800 she can answer questions in class, tell you what she wants to do, control our Alexis for music and tell you what she wants to eat. 

Josephine's mom says she can do almost anything. We agree – Jo has been visiting the Capitol with the Little Lobbyists since she was barely a year old. She shares her vibrant smile and love of bubbles with legislators from all over the country, reminding them that no matter what medical needs a kid might have, at the end of the day - our kids are just kids and they just want a chance to grow up.

In an interview with abc news "Tales from patients who stand to lose a lot from GOP health bill"  Jo's mom Samantha said:

“I never thought in a million years I would be someone who needs Medicaid. I think what people don’t realize is what the actual cost of healthcare is … If our family was just a healthy family and were talking about an occasional cold, our insurance would be fine. But when you start talking about $26,000 a month, unless you are wealthy, you don’t have that money.” 

Julian

Age 10, Ohio

Meet Julian. Julian loves video games, Pokemon, reading graphic novels, and dressing up (both in "snazzy" clothes and in costumes). He's super friendly and a helpful big brother. Julian has Marfan syndrome and asthma. He uses AFOs and a wheelchair to help him get around. Julian sees many specialists and takes multiple medications. Pain management is a challenge for him.

Julian’s mom, Maya says: “We would go bankrupt without the ACA. Everyone in our house has a significant pre-existing condition. One of my other kids has been on the Medicaid waiver list for 8 years and neither Julian nor our daughter can even get on the waiver list. Cuts to Medicaid just makes it that much more inaccessible to us and families like us.”

Submitted by Julian’s mom, Maya

Claire

Age 5, Tennessee

Meet Claire. Claire is hilarious, she loves to make people laugh. Listening to music and playing with water are two of her favorite things. Claire is also very determined - she’s working to master walking and, though she is non-verbal, she knows many signs and understands everything. She has two best friends, and many therapists and teachers who adore her. Claire has Cri Du Chat syndrome, congenital heart disease, hydronephrosis, silent aspiration, hearing loss, gross and fine motor weakness. 

Claire’s mom, Jessica says: “We would face financial ruin without the provisions of the ACA. Claire’s medical bill from her first surgery alone was over one million dollars. She will need a lifetime of care and support.”

Submitted by Claire’s mom, Jessica

Jaxon

Age 6, South Carolina

Meet Jaxon. Jaxon is always happy and giggling and he loves music, "Let It Go" is one of his favorite songs (in every language!). He also loves electronics, and can figure out how they work without any instruction at all. When he’s not in school, he likes to read, sing, and play video games with his younger twin brothers. Jaxon is Autistic and non-verbal. He needs occupational, speech, and feeding therapy to help him work on the skills he needs.

Jaxon’s mom, Lauren says: “Jaxon has an IEP [Individualized Educational Plan], and school provides an amount of independence and joy for Jaxon and the rest of our family. Without Medicaid Jaxon’s access to any therapies, specialists, and even his regular pediatric needs, would be near possible to meet.”

Submitted by Jaxon’s mom, Lauren

Izzi

Age 10, Missouri

Meet Izzi. Izzi loves to bake, cook, cheerlead, and participate in pageants. She is currently Missouri Miss Amazing Pre Teen, and uses her title to help fundraise for several charitable organizations. She also serves as ambassador with Children’s Miracle Network Hospitals.  Izzi is a great public speaker and advocate for herself and others. With her family, she’s traveled to Jefferson City many times to testify on behalf of disabled kids in front of House and Senate committees. Izzi has spina bifida and hydrocephalus and she uses a wheelchair to get around. 

Izzi’s mom, Becki says: “We are fortunate that Izzi receives coverage through my health plan and my husband’s. She also receives benefits through a Medicaid waiver, which covers her medical needs that are not covered through our plans. This includes basics like catheters and saline flushes. We strive to keep Izzi’s world as typical as possible. Without the Medicaid waiver, we would be hard pressed to get her daily supplies.”

Submitted by Harry’s mom, Jessica

Harry

Age 11, Illinois

Meet Harry. Harry is brilliant and funny - always making up puns and jokes. He loves reading and science and he wants to be a chef when he grows up. Harry is recovering from Stevens Johnson Syndrome, a rare disorder that affects the skin, eyes, and mucous membranes. He has had over 24 surgeries. 

Harry’s mom, Jessica says: “Prior to the ACA, my son Jack (now 14), was born prematurely. He and I were both denied coverage. He used 1/10 of his lifetime benefits as an infant. My son Harry (now 11), got sick with SJS in 2012, after the ACA. In his 4 weeks at the hospital, he needed $1 million+ worth of care. The 24 surgeries he's had since then, and the lifelong care he'll need, adds to that number. Until the 2016 election, I never had to worry about my sweet boy getting what he needs. I'm a public school teacher and can't afford the family plan my district offers. I don't know what to do.”

Submitted by Harry’s mom, Jessica

Maren

Age 5, Virginia

Meet Maren. Maren has an infectious laugh and  her koala bear hugs are famous. She loves unicorns, princesses, dancing, and her favorite color is pink. She plays with her twin sister, drives her wheelchair, and is in the water as often as possible. Maren was born with a rare disease from a spontaneous variant in the CACNA1A gene which causes developmental delay and low body tone globally. She is prone to respiratory infections and has two types of apnea. Maren sees many specialists, uses a power wheelchair to get around, and needs weekly occupational, physical and speech Therapy to build her strength and skills.

Maren’s mom, Carolyn says: “Her beautiful life is often overshadowed by the reality of a medically complex child who spends the majority of her time in doctors’ offices, at numerous therapies and in the hospital. The benefits of the interventions she received as a baby are immeasurable. However, our family quickly learned that a typical private health insurance policy would not be enough. When she was born, we lived in the state of Florida, where she was required to sit on a 10+ year waitlist for additional coverage.  Without it, she would have to miss hundreds of therapies a year. So we made a life-altering decision to leave our entire support system in Florida and move to Virginia, where the CCC+ Medicaid Waiver & secondary Medicaid coverage is vital to her ability to thrive. Maren and our family have adjusted to our move, re-built our new community & support system, but we never thought it would be this way. And it shouldn’t have to be. 

Maren’s first IEP was drafted when she was three-years-old in anticipation of her entering preschool, where she would have access to specialized learning and therapies. Having her academics and therapeutic services in one central location alongside building social skills with typical peers was our family’s dream. We have to admit that it has not been easy to ensure she has equal access to IDEA and FAPE. Attorney’s have been involved to ensure her safety is the number one priority. Losing these protections would guarantee that our daughter would have to be homeschooled.”

Submitted by Maren's mom, Carolyn

Jonathan

Age 6, New York

Meet Jonathan. Jonathan loves music (his favorite is Prince) and books (his favorite story is the Hungry Caterpillar). He also loves Mickey Mouse, Spider Man, and Daniel Tiger. Jonathan was born with a congenital heart condition, chronic lung disease, and failure to thrive. He also has Lennox-Gastaut Syndrome, a form of epilepsy. He’s had multiple surgeries and multiple hospitalizations, and has several doctor and therapy appointments each month. He requires nursing support at home and in school.

Jonathan’s mom, Leslie says: “Healthcare is a fundamental right, and services like Medicaid are invaluable when it comes to children like Jonathan who's parents often cannot work, or can only work part time because they must care for their child full-time. I once had a career, with insurance, and great benefits. I no longer have access to those because I'm a full time parent caregiver. Jonathan uses a wheelchair. One of the first things I always ask when being invited anywhere is, "Is it wheelchair accessible?." The ADA helps ensure we can visit places, and my son can enjoy the same things children who do not use wheelchairs have access to. For example, being able to go to the movies to see Spider Man. Having an accessible theater not only maintains the quality of Jonathan’s life, his caregivers’ as well. Wheelchairs are heavy to lift FYI.”

Submitted by Jonathan’s mom, Leslie

Taryn

Age 15, Arizona

Meet Taryn. Taryn believes each day is a new adventure. She loves visiting Disneyland with her Mom and Dad, playing with legos, watching her favorite Disney shows, and eating tortilla chips. Though she is non verbal, she is extremely expressive. Taryn was born with partial trisomy 18/Deletion of chromosome 14. She has partial agenesis of the corpus callosum, septo-optic dysplasia, epilepsy, pituitary hypoplasia, heart defects, common variable immune deficiency, severe G.I. conditions, ileostomy, neuromuscular scoliosis (fused spine from T2-L5), neuromuscular weakness and chronic pain. She needs the support of caregivers for daily living and self care, uses a wheelchair to get around, sees several doctors and specialists, and has begun a palliative care model. She receives IV Immunoglobulin treatments and is frequently hospitalized. Taryn loves being with her friends at school, but her family feels there is much work to be done for their state school systems to better implement IDEA and FAPE so Taryn can be fully included. 

Taryn’s mom, Dawn says: “ The protections of the ACA have allowed my daughter to not be excluded from our private insurance due to pre-existing conditions, or dropped due to exceeding lifetime caps. As of this month, we have exceeded $1.2 Million in claims paid through our employer insurance. If we lose these protections, we will be forced to have her total care covered solely by Medicaid Long Term Care in our State. Cuts to our Medicaid program could significantly affect us, because our commercial insurance doesn't cover several services and supports (like certain medical equipment, modifications, attendant care, respite and therapies) that allow Taryn to be at home. [Cuts] would risk the quality of medical care she may receive due to providers' willingness to contract with Medicaid.”

Submitted by Taryn’s mom, Dawn

Lexi

Age 5, Maryland

Meet Lexi. Lexi loves animals (her favorite is the flamingo) and helping to care for her horses and dogs. Her favorite exercise is swimming and she has no fear. She graduated from Pre-K during the pandemic and is excited to start kindergarten at home this year with her big sisters Madi (8) and Saige (12). Lexi also has a rare condition called Mastocytosis which requires daily medications and visits with multiple medical specialists.

Lexi’s mom, Nichole says: “Cuts in Medicaid mean that we may not be able to afford the medications Lexi needs to have a semi normal life, or the ability to pay for multiple specialists and therapies she requires. She sees specialists for allergy/immunology, neurology, movement disorders, and occupational and physical therapies - not to mention her normal pediatrician. Losing those protections and cuts to Medicaid could be life-threatening to Lexi, if we can’t access the care she needs when she needs it or afford her medications.”  

Submitted by Lexi’s mom, Nichole

Rylan

Age 8, Texas

Meet Rylan. Rylan loves Minecraft, legos, Pokemon, and Harry Potter. He enjoys competitive swimming and playing baseball. Rylan also has Immune Thrombocytopenia (ITP), an autoimmune blood disease that makes him more vulnerable to bruising, prolonged bleeding, and internal bleeding. 

Rylan’s mom, Kathy says: “As of right now there is no cure for ITP, just management. For the first 6 months of his diagnosis no amount of medicine or treatment made any difference. For about the past 2 years he's been on a daily medication that costs over $11,000 per month. I live in fear that I might lose my job and Rylan would lose his insurance. Even paying for one month's medication out of pocket ($11,000!) would bankrupt us. My husband and I both work in social services so we're not millionaires, we would have to make the choice to forego his medication and I guess just hope for the best. It would mean he would stop all sports and we would basically never travel, for fear of getting in an accident that we couldn't pay for.”  

Submitted by Rylan’s mom, Kathy

Dominic

Age 3, Michigan

Meet Dominic. Dominic loves playing with his siblings, dogs and cats, and visiting his Grandpa. He likes to play with action figures, ride his adaptive bike, and dance. He thinks the Minions are absolutely hysterical. Dominic also has laryngomalacia, failure to thrive, severe food allergies, developmental delay, hypotonic cerebral palsy, apraxia of speech, and severe apnea. Dominic takes multiple medications and uses a CPAP machine to help him sleep safely. He needs therapy to maintain his strength and motor skills, and uses leg braces and hand splints. 

Dominic’s mom, Alison says: “We are currently able to qualify for Medicaid, but we know that quite soon we won't be able to qualify any longer and that means dominic will go without a lot of what he needs because we won't be able to afford all of the therapy and supplies he needs.”  

Submitted by Dominic’s mom, Alison

Claire

Age 14, Washington D.C.

Meet Claire. Claire loves ice cream, fashion magazines, shoes, anything Disney, swimming, and laughing with her siblings. She has an incredible laugh. She loves books and has earned the nickname "the little Professor" at school.

Claire has a rare genetic disorder, microduplication of Chromosome 2p. Although there are only two known cases in the entire world, many of the resultant medical conditions are more common. Claire has a number of diagnoses, including: autism, asthma, epilepsy, hypotonia, and intellectual disability. She is completely reliant on others for all of her needs and care.

Claire was born in 2006, before the ACA was law. We constantly worried that Claire would reach her caps on care or that if my husband were to lose his job Claire would be uninsurable due to the multiple pre-existing conditions with which she was born. Before the ACA, we had to make all of professional and life decisions based on ensuring Claire's access to health insurance. 

Claire depends on Medicaid to cover significant costs necessary for her care that are not covered by private insurance. These include home health care necessary to provide both personal care to keep her safe within the home and nursing care, the ABA therapy that has opened up a new world for her, and some durable medical equipment that is not covered by private insurance but that allows her to be a part of her community and live at home. Medicaid even covered the cost of a hearing aid that private insurance denied. Medicaid also covers some of her educational costs, including school-based therapies.

Claire attends a school for children with complex medical needs and multiple and severe disabilities. She receives multiple therapies at school as well as special education services. Some of the cost of her education is covered by Medicaid. She has a 1:1 aide at school.

Claire uses a wheelchair and relies on ADA protections to access the community. While we appreciate the accommodations that do exist, we see everyday that more needs to be done. Where we live in Washington, DC new playgrounds and schools are being built with budgets in the millions of dollars that do not meet even the minimum standards of the ADA. This makes it difficult for Claire to fully integrate into the community and the lives of her siblings.

Submitted by Claire's mom, Jamie

Brennan and Brody

Age 11, Rhode Island

Meet Brennan and Brody. Brennan and Brody are identical twins and very happy guys. They’re awesome Nintendo Switch players and love to play Mario and Sonic games. They also enjoy 90’s pop rock and frequently sing along to their favorite songs. Brennan knows all the Marvel characters, and is Spider Man’s biggest fan. Brody is a comedian and loves making people laugh. Both boys also have a Chromosomal deletion of 7q, which causes neurodegenerative disease including epilepsy, autonomic dysfunction, and developmental delays. They need skilled nursing and caregiving to stay safe, take multiple medications, and use feeding tubes to get nutrition. School based therapies and accommodations are crucial for their learning and development. The boys use wheelchairs to get around, and the protections of the ADA help them explore their favorite spaces, like the library.

Brennan and Brody’s mom Alli says: “Without IDEA our boys may not have the opportunities to be in an academic setting or given the resources to help them learn. Special education services help them develop and maintain skills that enrich their quality of life. Prior to becoming Medicaid eligible and pre-ACA our family incurred so much debt from their premature birth and then the years long diagnostic process of a genetic disorder. I know what it’s like to be facing down a lifetime limit. Ultimately my husband and I were forced to file bankruptcy to climb out from under the pile of medical debt. Currently, Brennan and Brody receive 100 hours a week of skilled nursing care. Our nurses are our lifeline and allow the boys to live full lives in their own home. Since having consistent care their condition has stabilized significantly. The boys take many expensive medications and require mobility equipment, feeding supplies and therapies. Without Medicaid we would be unable to provide them with all they require to live. Cuts to Medicaid would jeopardize their health and safety and the ability for our family to maintain their care for the years ahead.” 

Submitted by Brennan and Brodys mom, Alli

Wyatt

Age 4, Maryland

Meet Wyatt. Wyatt loves to feel the wind in his face, and play with his dogs. Wyatt enjoys finding trouble, stumping medical professionals, and doing things his doctors said he likely wouldn't do. He's learning to walk, pulling to stand, and loves to make others laugh. Wyatt also has Optic Nerve Hypoplasia, microcephaly, congenital anomaly of the brain, chronic lung disease, obstructive and central sleep apnea, epilepsy, pulmonary valve dysplasia, hypothyroidism, and growth hormone deficiency. Wyatt uses a feeding tube to help with nutrition, a wheelchair to get around, a BiPAP ventilator for breathing assistance at night, and a pulse oximeter to monitor for hypoxia. At school, Wyatt’s IEP allows him to be included with his peers while getting the therapy and educational support he needs.

Wyatt’s mom Lori says: “The protections provided by IDEA and FAPE mean my child gets the education appropriate for him. It means my child can safely attend school, interact with his peers, and does so with professionals who know how to support him. Access to affordable, quality health care means equitable access for all. It means not punishing someone for a congenital condition. It means being able to sleep at night because my son's needs are met, including all of his medical equipment. Losing the protections of the ACA would mean my sons multiple congenital conditions could be used against him in terms of coverage. It means the uphill battles we fight daily would be amplified, without access to things like medical equipment, a wheelchair, and food. It means people would give up on my son.”

Very simply, the ACA and Medicaid have been necessary tools for saving Josie's life.”  

Submitted by Wyatt’s mom, Lori

Josie

Age 3, North Carolina

Meet Josie. Josie loves talking (her dad says she’s a celebrity!),running, balance-biking, attending school, reciting her alphabet and colors, and being all-around mischievous like any other preschooler. Josie is very small for her age. She was born 13 weeks prematurely with an extremely-low birth weight and chronic/congenital conditions involving her heart, lungs, thyroid, and GI health. She also has asthma and general feeding difficulty. Josie needs medication, nutrition support, and special education resources in her inclusive preschool classroom to help her build the strength and skills she needs to keep thriving. 

Josie’s dad Matt says: “Josie was born with pre-existing conditions. The words ‘pre-existing conditions’ really are nonsensical in her case–these medical circumstances just are part of who she is. The Affordable Care Act's protection of coverage means that she won't be indentured to her employer as an adult just to access health care. Removing the lifetime cap on care is even more fundamental because she may well have consumed her entire life's quota during the 142-days that she spent in Level IV NICU.

Meanwhile, waiver into Medicaid has allowed us, her family, to continue working and avoid bankruptcy during periods in which her monthly prescriptions alone billed at over $8,500. A point came at which her access to this waiver was in question, and–with a straight face–a case officer said it was time to think about leaving the workforce just to get a family income low enough for Josie to requalify for the coverage. 

Very simply, the ACA and Medicaid have been necessary tools for saving Josie's life.”  

Submitted by Josie’s dad, Matt

Tyler

Age 12, Virginia

Meet Tyler. Tyler loves music and singing. Tyler is currently undiagnosed, but Migrating Partial Seizures of Infancy is a potential diagnosis. Tyler has had seizures since he was 5 months old and has experienced status epilepticus twice. He has limited movement, uses tube feeding for nutrition, needs breathing support, positioning assistance, and a wheelchair to get around. 

Tyler’s mom Julie says: “I’m very proud to say Tyler is integrated in a general classroom at his zoned school. We’ve had our ups and downs with the school. In general, they don’t know how to include or teach him, but at the same time they are doing just that—including and teaching. [If we lost the protection of the ACA, or if Medicaid is cut] We will become significantly poorer overnight due to his expensive equipment, therapies, and medication but that’s ok.  As long as our bills are paid we will be fine but what about if and WHEN his father and I die? Tyler’s care would be non-existent without some type of public assistance.”

Submitted by Julie, Tyler's mom

Abigail

Age 10, Pennsylvania

Meet Abigail. Abby is a beautiful, fun, mischievous  10 year old who loves playing with her big sister and brother, going to the theater, music, exploring the outdoors, and of course, all things Disney. She is the most authentic person you will ever meet, never pretentious or afraid to just be herself.

Abby has a rare genetic syndrome called Primrose Syndrome. She has epilepsy and mitochondrial dysfunction which impacts many of her organs. Medicaid helps her family significantly. Even though her family has private employer-based insurance, it wouldn't be possible to afford Abby's extensive medical bills without Medicaid. It has been essential in allowing Abby to access the care she needs to grow, live, and participate in her community.

Abby is Deaf-blind and attends fifth grade at a local school for Deaf children. Even though she can't speak or sign, she understands what people are saying and signing to her. She cherishes her friendships. She uses a special computer tablet to communicate that is funded by her private insurance and Medicaid. She also uses some tactile communication, often utilizing her sense of touch to make herself understood, or even to identify people if she cannot recognize their faces visually. At school, Abby receives multiple therapies and specialized education. Medicaid assists the school district in funding these therapies as well as the 1-1 aide that Abby needs.

Abby uses a custom wheelchair when she is out in public, which means she needs accessible ramps in stores and restaurants as well as accessible public transportation. Additionally, as a Deaf child, Abby needs an American Sign Language interpreter in order to understand what is being said. The ADA allows Abby to access her community, just like every other kid.

Submitted by Erin Gabriel, Abby’s mother

Liam

Age 12, California

Meet Liam. Liam likes SpongeBob, the San Francisco Giants, riding his adaptive bicycle, swinging, listening to music of all kinds, and reading Harry Potter and Percy Jackson. Last spring he got to play baseball with the Miracle League for the first time ever (he was on the Giants, of course). And, like a lot of 12-year olds, he thinks farts are funny. When Liam was a year old, complications following his 3rd heart surgery caused brain injury due to oxygen deficiency. Liam has cortical visual impairment and daily seizures. He uses a tracheostomy to breathe, a feeding tube for nutrition, and a wheelchair to get around. He requires care and supervision 24/7 and has a wonderful team of nurses to help. Liam LOVES school where he receives all of his therapies. Thanks to IDEA (Individuals with Disabilities Education Act) protections, Liam has safe transportation to and from school and a 1:1 nurse to support his medical needs while he’s there. 

Liam's mom Patty says: "Without access to quality health care, Liam would not be here. It's that simple. Before the surgery that led to his brain injury, his itemized hospital bills were already over $1.2M, and he hadn't even turned two. He is an insurance company's worst nightmare. Prior to gaining employer sponsored insurance, we were paying out of pocket for coverage. The ACA ensured insurance companies could not reject him or charge exorbitant rates because of his pre-existing condition. They also couldn't decide he was too expensive and drop him because he reached a lifetime cap. Without those protections we would not have been able to keep him insured, and while losing them would be devastating, cuts to Medicaid would be equally as catastrophic. Medicaid fills the gaps left by insurance and those gaps are huge. Medicaid is what covers his nursing, his wheelchair, formula and tube feeding supplies, oxygen and respiratory supplies and the OT, PT, vision and speech therapy he requires. Medicaid is our lifeline.”

Submitted by Patty, Liam's mom

Megan

Age 23, Massachusetts

Meet Megan. “I like to be creative. Some of my favorite things to do are paint, dance, and bake. I love to go sailing and skiing with my family. My favorite place to be is at the beach sailing. I recently got my bachelors of social work and soon I will start a program to earn my masters of social work. My goal is to help advocate for people with disabilities. 

I have Epilepsy, cyclic vomiting, irritable bowel syndrome, anxiety, depression, insomnia, and OCD. I have check up visits for progress, therapy appointments, an upcoming EEG or my epilepsy, and sleep studies. Currently I need to take medication. My epilepsy is somewhat controlled, but I still have multiple seizures a day. I continue to need multiple hospitalizations per year because of my cyclical vomiting and I rely on the hospital to listen and provide a good quality of care. 

Access to affordable quality health care means, instead of throwing up for 3-5 days when I’m having a cyclic vomiting episode, I can go to the hospital to get the necessary medical intervention I need. It also means I can get the epilepsy medication my doctor prescribes. Losing the protections of the ACA would mean that once I turn 26 and have to be on my own health insurance, I’d be limited to insurances that accept my pre-existing conditions. During college (and into my masters program) I have had 504 accommodations which consisted of taking breaks during class, being able to miss class for medical reasons, being able to hand assignments in late (within reason), and being able to use a computer in class. These accommodations have allowed me to succeed.”  

Submitted by Megan, Little Lobbyists

Zachariah

Age 9, North Carolina

Meet Zachariah. Zachariah is a happy guy who loves his twin brother and his iPad (he never leaves home without them!). Zachariah has a heart defect and has needed open heart surgery. He and his brother both have Autism and are non-verbal.

Zachariah’s mom Carol says: "Medicaid cuts would significantly change my twin boys quality of life. One of the twins has a heart defect. He required open heart surgery at 4 months old. He will need another heart surgery at the age of 13. It's a life or death situation for our family and for many others. Please to everyone in congress don't make our kids sick again!”   

Submitted by Carol, Zachariah’s mom.

Lily

Age 2, Illinois

Meet Lily. Lily loves to play outside, follow her pup Bo everywhere, and dance. She loves being around adults and is always the center of attention! Lily was born at just 24 weeks and has severe chronic lung disease. She uses a tracheostomy and ventilator to breathe and has a g-tube for nutrition.

Lily’s mom Jessica says: "If we were no longer to qualify for the Medicaid waiver, there is no way that we could afford to keep Lily at home and out of a rehabilitation center. Her equipment, nursing care (which we have very little of), hospital admissions, and specialist visits cost upwards of $50,000 per month. The waiver allows us to focus on her care rather than how to keep a roof over our heads.”   

Submitted by Jessica, Lily’s mom.

Max

Age 7, Maryland

Meet Max. Max loves reading books, enjoying music, going to the beach, and spending time with his friends. For his last birthday, he asked for a superhero party! Max also has spinal muscular atrophy, type 1. He has a tracheostomy and ventilator to help him breathe and a g-tube for nutrition. Max uses a power wheelchair to get around and a computerized communication device to speak. He is supported with physical, occupational, and speech therapy and also receives a new life-saving (but highly-priced) treatment for SMA. Max needs constant skilled care to keep him safe and well.

Max’s dad Jonathan says: "We currently are very fortunate to have good medical insurance through my employer which is covering Max's needs. However, should something happen to me or my job, we would be forced to make serious choices in what could be a rather bleak landscape of options. Many families in our situation depend on Medicaid to keep their child alive, and the protections of the ACA regarding pre-existing conditions and no lifetime caps are critical to ensuring that our children aren't pushed out of the system and into decline.”   

Submitted by Jonathan, Max’s dad.

Róisín

Age 4, California

Meet Róisín. Róisín (pronounced RO-sheen, an Irish name that means 'Little Rose') is super sweet and always laughing. She loves birds and animals(especially cats), riding horses in equine therapy, going to the beach to play in the waves and dip her toes in the sand. When she was younger, Róisín played 'Young Kate' in the first season of "This Is Us" on NBC with Mandy Moore and Milo Ventimiglia. Róisín also has spastic quadriplegic cerebral palsy. She is non-verbal and non-ambulatory, but very expressive. Róisín has had multiple major surgeries and will need additional surgeries in the future. Since she was a baby, she has benefited from early intervention and multiple therapies.

Róisín’s mom Aileen says: "We would be simply unable to cover all of Róisín's medical needs without her MediCal [Medicaid] coverage. It is clear we have a long way to go in supporting kids with complex medical needs and unique challenges. IDEA [Individuals with Disabilities Education Act] has protected Róisín by allowing me to disagree with her IEP [Individual Educational Plan), file 2 rounds of due process with the state, and mediate with the school district to obtain FAPE [Free and Appropriate Education]. Almost everything Róisín has needed, physically, functionally, emotionally, psychologically, etc. has been an uphill battle. But I am used to fighting for her by now, by being the squeaky wheel to get her what's best, and I will not stop advocating for her needs!”   

Submitted by Aileen, Róisín’s mom.

Samuel

Age 9, Connecticut

Meet Samuel. To Sam, every day is the “best day ever.” He is kind and funny and always has a huge smile on his face. He loves to play with action figures, race cars, and spend time with his friends. Sam also has Vanishing White Matter disease, a very rare untreatable and terminal brain disease which causes the white matter in Sam's brain to disappear over time. Sam enjoys school, where he gets the therapy he needs and sees the friends he loves. He uses a wheelchair to get around.

Sam’s mom Allyson says: "After four years on the waiting list, we got a Medicaid waiver. It means everything. Sam needs equipment – wheelchairs, activity chairs, bath chairs, standers, lifts – much of which is not covered by our primary insurance. Without Medicaid, or with cuts to Medicaid, our family will not be able to afford to properly care for him.”   

Submitted by Allyson, Sam’s mom.

Parker

Age 1, Missouri

Meet Parker. Parker is a foodie and loves a variety of purees. She loves books (turning the pages on her own is her favorite!), light up toys, and little cars that she can slide back and forth on her high chair tray. She's a daddy's girl, but thinks her momma is hilarious. She loves to play peek-a-boo, even over video chat with her grandparents. Parker also has Amyoplasia, Arthrogryposis and Gastroschisis. She has muscle/joint contractures in her upper extremities that limit her ability to move her arms and a clubbed right foot. Parker uses a tracheostomy to help her breathe and a g-tube for nutrition. She sees many specialists  and needs multiple therapies to help her grow and thrive.

Parker’s mom Cayla says: "If we lose Medicaid we lose Parker's weekly in-home therapy sessions. Her orthotics would barely be covered, along with her future surgeries. We would lose in home nursing, we will have to pick and choose what therapy is more important, and have outrageous bills monthly to cover her medical supplies. It would be detrimental to us financially and not allow her to receive the quality of care she deserves. Her hospital stay after birth alone was well over 2 million. We’re trying to get on the [#Medicaid] waiver in MO but we’ve been fighting to just get on the waiting list for 8 months. We’re planning to move to Kansas for their waiver that takes into account actual disability and need over income. Missouri strictly goes by income after 1 year if the child was in the NICU for over 30 days. We spent 157 days.”   

Submitted by Cayla, Parker’s mom.

Irelynn

Age 12, Virginia

Meet Irelynn. Irelynn loves Billie Eilish, watching and creating Tik Tok videos, wearing Vans, playing Roblox, and all the other regular things tweens are into. She is brave, sweet, and tough. Irelynn has  DiGeorge Syndrome/22q deletion syndrome. She has epilepsy, kidney reflux, developmental delay and intellectual disabilities, carotid artery narrowing, Cerebral Palsy, Hashimotos disease, vitamin deficiency, immunodeficiency, asthma, neurogenic bladder, short term memory loss, brain lesions, chronic joint pain, dental issues, anxiety, PTSD from medical trauma. Irelynn takes multiple medications and supplements, wears AFOs and uses a wheelchair to get around. She needs assistance with daily life and will soon get a device to help her communicate. 

Irelynn’s mom Chelsea says: "I’m scared she will lose her Medicaid. Without medicaid as a secondary insurance, I can’t afford my daughters care. I don’t know what I would do. My husband is active duty in the Navy. Tricare doesn’t cover everything, and military facilities can’t accommodate her care, so without Medicaid I can’t afford her medical needs/equipment and therapies.”  

Submitted by Chelsea, Irelynn’s mom.

Israel

Age 10, Maryland

Meet Israel. Israel is amazingly kind, caring, and loving. He is eager to please, but has strong opinions and stands firm in his belief of right or wrong. Israel enjoys horseback riding, studying Kung-Fu, camping, fishing, and advocating for himself and others. Israel also has autism. 

Israel’s Dad Rico says: "I don't know if you have ever met a Superhero. Let me introduce you to a real life Superhero, my son, Israel. If you ask Israel, ‘What do Superheroes do?,’ without hesitation he will reply, ‘We save the day by helping people!’ My son has a diagnosis on the Autism Spectrum and critical resources [like therapy] are needed for Israel to develop and blossom into a contributing and productive member of his community, as a American, and as a member of our global society. A reduction to ACA or Medicaid would be devastating to Israel's overall development, and the future of our country's greatest natural resource, our children.”   

Submitted by Rico, Israel’s dad.

Adeline

Age 3, North Carolina

Meet Adeline. Adeline loves to bake cookies, swim with her cousins, read books about unicorns, feel the wind in her face on the swing, be goofy with her little brother, tease us using her eye gaze device, watch Sesame Street, and be sung to by her daddy. She is a sassy goofball with the most infectious belly laugh. Adeline has Rett syndrome and her body has a hard time regulating functions automatic for most people, like breathing, swallowing, digestion, and sleep. Adeline needs multiple medications and therapies, including speech, physical and occupational therapies and hippotherapy. She uses an eye gaze device to help her communicate.

Adeline’s mom Kelly says: "Adeline needs assistance for all activities of daily living, so we are deeply grateful for the home health aide who is at Adeline's side 25 hours a week. Medicaid pays for her salary. Adeline will always need therapy, [but] private insurance covers only 25 visits a year. Medicaid allows her to have twice weekly sessions of PT, which is critical at her young age. Medicaid has paid for the medical equipment like her suction machine that helps her breathe when she is sick, her sleep machine, stander, AFOs, adaptive tricycle, bath chair, activity chair, and adaptive stroller. This represents thousands and thousands of dollars in equipment alone, not to mention her medications. Having this access for us means we can make decisions based solely on what Adeline needs to be comfortable and safe.”   

Submitted by Kelly, Adeline’s mom.

Rayva

Age 11, Indiana

Meet Rayva. Rayva loves to be outside and on the move. She loves to swim, swing, and feel the wind in her face. Rayva has Microcephaly, Cerebral Palsy, and Epilepsy. She is Deaf and blind.

Rayva’s mom Natasha says: "Rayva receives in home nursing, equipment, medications, procedures and medical devices with her insurance [Medicaid]. She used a cochlear implant and has specialty formula that is very expensive. [At school] Rayva needs assistance with all tasks and relies heavily on the protections IDEA provides. Accommodations to public places allow Rayva to participate in almost all activities with her peers.”  

Submitted by Gillian, Raphael’s mom.

Raphael

Age 4, Texas

Meet Raphael. Raphael is determined, hilarious, and incredibly curious! He loves music, books, play doh, playing pretend doctor, teaching his little sister, and helping clean the house. Raphael has VACTErl. He has had 7 major surgeries to connect his digestive system and alleviate pressure in his brain He has a feeding tube to help him maintain his weight, receives therapy five times a week, and has an amazing home nurse who helps him stay healthy. 

Raphael’s mom Gillian says: "Without the ACA and Medicaid, my son’s life and our livelihood would be at risk. Raphael needs monthly shipments of medical supplies and multiple therapy visits per week, which are covered by Medicaid. He gets sick easily, and when he does, he tends to get REALLY sick. Those additional health costs are covered. Medicaid provides home nursing that keeps Raphael healthy and allows my husband and I to work at jobs that matter to us and provide for our family.  Both the ACA and Medicaid protect Raphael’s right to health care. Due to his complex medical needs, Raphael would not qualify for health insurance without the ACA’s guaranteed coverage of pre-existing conditions. Without the ACA and Medicaid, Raphael would have maxed out his lifetime health care cap long before his third birthday.”     

Submitted by Gillian, Raphael’s mom.

Wilhelmina

Age 6, Illinois

Meet Wilhelmina. Mina is creative and loves to color, paint, and draw. She also loves playing outside with bubbles or riding her bike. Her big brother Brandon and her dog Astrid are her 2 favorite things. Mina has cryopyrin-associated periodic syndrome (CAPS), an autoinflammatory disease of the immune system. She also has sensory processing disorder and hypermobility syndrome.

Mina’s mom Mande says: "Mina is a happy kid despite her chronic pain. Without proper treatment (a monthly biologic injection that suppresses her immune system), her body would be attacking itself daily through fevers, rashes, joint pain, GI issues, headaches, eye problems, progressive hearing loss, organ failure, and/or death. Mina’s main injection costs $17,000 every month. Her specialist appointments include GI, neurology, audiology, rheumatology, ophthalmology, and physical therapy. There is NO WAY we could afford these things. Without Medicaid Mina will die.”   

Submitted by Mande, Wilhelmina’s mom.

Arthur

Age 6, Florida

Meet Arthur. Arthur has an infectious love for life and brings a smile to everyone’s face. Arthur was diagnosed at birth with Tuberous Sclerosis Complex.  Arthur has tumors on his brain, heart, eyes, kidneys & skin. When he was 2 months old, he began having seizures. When he was 13 months old, he had brain surgery to stop the hundreds of seizures he was having each day. Today Arthur is 6 years old and has intractable epilepsy, intellectual disability, autism, and is non-verbal. 

Arthur’s mom Amy says: "We are fortunate to have health insurance and the ability to pay for all of the therapies he so desperately needs. If not for the Affordable Care Act, Arthur would not have access to health insurance. There is an 8 year wait list in our state for the Medicaid Waiver, which is unacceptable. The Medicaid Waiver provides so much for families who are unable to afford all of the necessary services needed for individuals with disabilities.”   

Submitted by Amy, Arthur’s mom.

Marianna

Age 7, California

Meet Marianna. Marianna LOVES everything Frozen – watching the movie, singing along and playing pretend with her Elsa, Anna, Olaf, Kristof and Sven toys. Her other favorite movies are Monsters, Inc. and Monsters University (she thinks they are hilarious) Marianna is very affectionate and, just like Olaf, she loves to give warm hugs. Marianna has Early Infantile Epileptic Encephalopathy, astigmatism, low muscle tone, cerebral palsy, sleep apnea, autism, cortical vision impairment, and seizures.  

Marianna’s mom Catrina says: "Medicaid covers not only her healthcare, but also covers In-Home Supportive Services (IHSS). These are so important to her quality of life within our home. It would be unimaginable to not have these available.”  

Submitted by Catrina, Marianna’s mom.

Aaron

Aaron, age 19, Illinois

Meet Aaron. Aaron likes to run. He ran and swam in high school, and runs track and cross country in college. He also likes to watch sports, especially college basketball, major league basketball, and soccer. He loves to read, and enjoys books about sports and politics, and a little fiction. Aaron has epilepsy and cerebral palsy from a catastrophic birth injury. He needs regular visits with his physicians and costly medications to control his seizures.

Aaron says: "Right now my insurance is through my family and we have great insurance. But when I turn 26 I will have to get my own insurance and I worry about what will happen if I lose the ACA protections about people with pre existing conditions. 26 is not very far away for me so it's something I really do think about. I had an IEP when I was in pre-k through high school. I had a parapro who helped me through k-12 and I had accommodations in testing. In college, I get accommodations on my testing and where I live. ”

Submitted by Aaron

Tess

Tess, age 2, Wisconsin

Meet Tess. Tess is full of smiles, giggles, and the best snuggles. She loves dance parties, Goofy, reading “Brown Bear” (over and over), and her big sister most of all. Tess was born with polymicrogyria, microcephaly, congenital CMV, and cerebral palsy. She is deaf and has global developmental delays. She uses a G-tube for nutrition and needs ongoing therapies to thrive. 

Tess’s mom Sara says: "We have great insurance, but unfortunately, we get denied a lot for supportive devices and our therapies would run out before August without our Medicaid Waiver. The Medicaid waiver has helped with supportive devices, as well as covering ongoing therapies. We are so, so grateful to have this support so we can focus more on loving Tess and less on high medical costs.”

Submitted by Sara, Tess’s mom.

David

David, age 9 Alaska

Meet David. David loves Legos, music, and is learning stop motion animation as part of Sealaska Heritage Institute’s Digital Storytelling summer camp. He is a proud member of the Chilkat Tlingit tribe and learns his Native language and cultural traditions at Klukwan school. David has a rare genetic disorder called Mucopolysaccharidosis Type 1 (MPS1). After a successful bone marrow transplant when he was 18 months old and multiple surgeries David is thriving. MPS1 affects every part of the body, and David needs weekly enzyme infusions, surgeries, and multiple specialists. David also has a service dog named Rocky (that he helped train!), who helps with medical alerts and mobility support. 

David’s mom Maggie says: "Without Medicaid David would not be able to travel to his specialists for his rare condition and our family could never afford his life saving medicine. We had good employer based insurance during his bone marrow transplant but it still nearly bankrupted our family with lost work time, specialist copays and other hidden costs. Removal of protection for pre-existing conditions would be a death sentence for him. 

In rural Alaska it takes constant advocacy and even then David’s needs are not always met. Many businesses and spaces are not wheelchair accessible. There is no public transportation and pain prevents him from going out if he cannot ride in his wheelchair. Fortunately our tribe purchased a lift van we can access and has a transportation program for the last year that supports us but it is only available at limited times. Access to his service dog under ADA is vital to him as the medical alerts tell us when his respiratory or cardiac function needs support as well as his allergies.”

Submitted by Maggie, David’s mom.

Chloe

Chloe, age 14 Ohio

Meet Chloe. Chloe can remember and sing songs she hears, sometimes after just one listen. She’s bright, resourceful, can light up a room with her smile, and is adored by her classmates, friends, and siblings. When Chloe was 4 months old, she was diagnosed with Optic Nerve Hypoplasia. She is legally blind, growth hormone deficient, has seizures, and autism. Chloe uses an assistive device to communicate, sees many specialists, and needs multiple therapies and medications to survive and thrive.

Chloe’s mom Leah says: "Without Medicaid, Chloe would not have received early intervention to give her the best possible start, and her medications and supplies would be too costly for us to afford. While we were waiting on a waiver, we had to argue with our insurance company for TWO YEARS that covering her growth hormone treatment was necessary. No child should be forced to go without any treatment that has been deemed necessary by a doctor because of limits on insurance. Even worse, if there would be cuts to Medicaid, there would be little to nothing to fall back on if insurance still refuses to cover services or expenses. Further, since Chloe was diagnosed at 4 months old, anything related to her condition can be determined to be a pre-existing condition, and could bar her from having treatments and expenses covered.

Chloe receives therapies at school that help with her education. Without the protections provided by IDEA, she would not be able to attend our local school with her siblings and typical peers. Being able to attend our local school has allowed her to enjoy experiences she would not otherwise have, like friendships, a sense of community, and learning life skills that will help her as she grows older.”  

Submitted by Leah, Chloe’s mom.

Katelyn

Katelyn, age 11 Texas

Meet Katelyn. Katelyn loves singing all kinds of songs, she even memorized all the lyrics to Bohemian Rhapsody! She enjoys soccer, climbing on the playground, watching Youtube and playing Roblox and board games. She loves to make new friends and has a happy outlook on life. Katelyn was diagnosed with 18P- Syndrome and Congenital Bilateral Perisylvian Polymicrogyria. She has psychiatric disorders including sensory integration disorder, extreme anxiety, medical PTSD, and OCD and is growth hormone deficient. She uses a feeding tube to get nutrition and needs therapy and medications to survive and thrive. 

Katelyn’s mom Laura says: "Previous cuts to Medicaid have already made it impossible for Katelyn to get the therapy she needs. Every company I have called has told me that there are no available therapists in my area and I live just outside a major metropolitan area. Medicaid cuts have deterred qualified therapists from working with kids like my daughter because they can't make a living wage. As Katelyn's sole caregiver and a single parent, I don't have any health insurance because Texas saw fit to lower the income cap to receive Medicaid for families like mine down to under $300 a month. Apparently I'm not poor enough even though I can only work part time as a Substitute teacher because of the demands of her care. If anything happens to me and I can't get medical care, what becomes of her?”  

Submitted by Laura, Katelyn’s mom.

Chance

Chance, age 8, California

Meet Chance. Chance is friendly and energetic! He loves to play outside, watch his favorite videos, and make people laugh. Chance also has a rare genetic condition called Oto Palatal Digital Syndrome, chronic lung disease, and developmental delays. He uses a trach to help him breathe and sees an ENT and a Pulmonologist to stay healthy. 

Chance’s mom Jennifer says: "Chance was born with a rare genetic condition called Oto Palatal Digital Syndrome. I have this syndrome as well, along with my 13 year old daughter. Losing the protection for people with pre-existing conditions would be devastating for not only Chance, but most of our family as we have a range of health issues. Cuts to Medicaid would mean uncertainty about how we would be able to continue receiving the medical supplies and the quality care from specialists that Chance relies on. The impact on his care and the financial impact to our family would be devastating.”  

Submitted by Jennifer, Chance’s mom.

Ruby

Ruby, age 9, Iowa

Meet Ruby. Ruby loves to shoot hoops, play soccer, dance, play the wii, swim, and play with her dog. She is a hard core Peppa Pig fan and PJ Masks is a close second. Ruby is a great helper in the kitchen and with laundry. She gives great hugs and has the best smile. Ruby also has Down syndrome, congenital hypothyroidism, reactive airway disease, sleep apnea, she wears glasses and has a hearing aid, adhd & odd, reflux and chronic constipation, chronic blepharitis in her eyes, recurring ear and sinus infections, and mitral valve regurgitation. She sees several specialists, including a developmental pediatrician, endocrinologist, pulmonologist, cardiologist, GI, opthamologist, ENT and audiologist.

Ruby relies on Medicaid and her mom Emma says: "Losing protection would be detrimental. It would certainly affect her ability to obtain healthcare as an adult. Ruby is included in the gen ed classroom for most of her day. She is a loved and valued member of her class. She receives therapy at school to help expand and grow her communication.”

Submitted by Emma, Ruby’s mom.

Aire

Aire, age 8, Virginia

Meet Aire. Aire is a funny, sensitive, smart guy. He is Neurodivergent and has an underdeveloped immune system and severe allergies. He relies on treatments to strengthen his immune system and control his allergies. Access to occupational, physical, psychological, and speech therapy helps him fully participate in school or community activities.

Aire’s mom Walewska says: "When Aire received his Autism Spectrum diagnosis at age 3, I was worried that this pre-existing condition would disqualify him from or price him out of health care coverage. I quickly learned about the affordability and anti-discrimination measures that would protect my son from outright coverage denials, excessive premiums or deductibles, and lifetime caps. Even with these protections, accessing appropriate medical and therapeutic care can become cost-intensive. Without them, Aire would be unable to access the care he needs to thrive in and contribute to school and community activities to the same extent as neurotypical children without pre-existing medical conditions.”

Submitted by Walewska, Aire’s mom.

Agnes

Age 2, Maine

Meet Agnes. Agnes has defied so many odds and is such a funny little girl! She LOVES playing pretend and laughs so hard at peek a boo. She recently learned to crawl and got her first wheelchair and she's on the go! She LOVES going for hikes and walks and splashing in water. Agnes was born with a rare condition called OEIS Complex (her bladder and bowels were outside her body when she was born) and has a colostomy. She also has a very rare form of Spina Bifida called terminal myelocystocele. In her first years of live, Agnes endured months of hospital stays and 9 surgeries. Her family travels to Boston Children’s Hospital every few weeks for appointments and imaging. 

Agnes’ mom Molly says: "If there were cuts to Medicaid the healthcare costs for Agnes would be so incredibly high. We’d most likely have to leave her current medical team and her care wouldn't be what she needs to thrive. If protections for people with pre-existing conditions change necessary healthcare for our daughter would no longer be accessible. She requires very acute specialists to maintain her quality of life.” 

Submitted by Molly, Agnes’ mom.

Emmaus

Age 9, West Missouri

Meet Emmaus. Emmaus has an infectious laugh, a caring heart, and will dance at any opportunity. She enjoys music ranging from Adele to Billie Eilish and loves being read to and sung to. Starbucks and the zoo are her favorite places, and her favorite animal is the hippo. Emmaus also has Tuberous Sclerosis Complex (TSC), and has tumors in her brain, heart, eyes, kidneys and skin. She has a global developmental delay, epilepsy, and autism. She uses a g-tube for liquids, takes medications, and needs one on one care.

Emmaus’ mom Laurisa says: ""Emmaus was 5 when we knew we would need to move to a state with an accessible Medicaid waiver, the one in our state had 10+ years of wait time. Getting onto a Medicaid waiver changed our lives. Before we got on the waiver our finances were never stable due to high insurance deductible and out of pocket maxes. More than once we partially filled a prescription because we could not afford the whole thing. No family should have to chose between groceries or medicine for their child. Decreased funding to our Medicaid waiver would be devastating to our family.”

Submitted by Laurisa, Emmaus’ mom.

Evelyn

Age 19, West Virginia

Meet Evelyn. Evelyn loves to go camping, sit by the fire, and throw rocks in the river. When she’s not camping she enjoys car rides, Pixar movies, and spending time with her family—especially her dad and her dogs! Evelyn has an undiagnosed neurological genetic condition. She has severe epilepsy, scoliosis, low muscle tone, and is non verbal. She uses an adaptive stroller to get around, and has a service dog to help with seizure alert and response. 

Evelyn’s mom Janice says: "Evelyn’s medications are several thousand dollars a month. Lifetime spending caps would be disastrous, as well as tightening of prescription drug coverage. Her Medicaid Waiver gives me the ability to be Evelyn’s full time caregiver, and allows us to employ a much needed respite provider. Without the waiver, it would be a financial disaster for our family.”

Submitted by Janice, Evelyn’s mom.

Koa

Age 5, FLorida

Meet Koa. Koa loves to help cook and enjoys learning all the different ways foods are prepared. He loves music, dramatic play, and  is a wonderful painter with a special talent for color and composition. Koa is Autistic and has epilepsy, hypotonia with motor challenges, asthma, and frequent infections. He’s needed inpatient hospital care several times. 

Koa’s mom Shanna says: “Because we technically make too much income we have huge expenses to pay out of pocket, even with “good” insurance. Our son has been refused care due to our inability to pay, and we are unable to get assistance because we make too much. But I have to stay home in order to care for the boys so we are really just stuck between a rock and a hard place. At this point we can’t even get to the door of Medicaid so I can’t imagine how much worse it is for other families as well.”  

Submitted by Shanna, Koa’s mom.

Grace

Age 11, South Carolina

Meet Grace. Grace loves reading (especially Harry Potter), swimming, Playmobil, LEGO, and American Girl dolls. She likes to pretend she’s a doctor/nurse/child life specialist for her Bitty Baby and has even given a doll an IV with a real needle with the help of her child life specialist. She is brave and bold and has even done a TEDEd talk about her beloved child life specialist and how medical play has helped her process past traumas. Grace is kind, caring and nurturing and loves helping out with younger kids. During our last stay at Ronald McDonald House she even taught a science class for younger kids all about slime.

Grace has cyclic vomiting syndrome, dysautonomia, and likely gastroparesis. Before starting an experimental life-changing treatment in 2019 (IB-Stim which is now FDA approved for IBS), she experienced chronic nausea, muscle weakness and fatigue with joint pains, difficulty sleeping, brain fog, sensory sensitivity, abdominal pain and headaches. Today, Grace needs neurostimulator treatments every few months, uses a wheelchair and walker to get around, and is thriving with homeschooling. 

Grace’s mom Cortney says: "Although Grace is currently covered with adequate health insurance, we pay several thousand dollars out of pocket every year for treatments that aren't covered. We worry that further cuts might mean she would lose this life-changing treatment altogether and that her independence in the future will be severely threatened.”   

Submitted by Cortney, Grace’s mom.

Oliver

Age 5 California

Meet Oliver. Oliver loves music, snuggles and being with his family where he shares pure love and brings much joy. He has cerebral palsy due to significant congenital brain abnormalities. Oliver also has epilepsy, chronic lung disease, dysphagia, developmental delays, and visual impairment. He is non-verbal and non-ambulatory. He uses a gtube for nutrition and medicine, oxygen support to breathe, and a wheelchair to get around.  

Oliver’s mom Rachel says: "Oliver would not survive, let alone thrive without good medical care. For instance, just a mild cold often necessitates hospitalization with significant respiratory assistance. Home nursing at night, provided through CCS/Medi-Cal (Medicaid), allows us to peacefully sleep and wake up with energy to tackle the day with Oliver.”   

Submitted by Rachel, Oliver’s mom.

Naomi

Age 3, North Carolina

Meet Naomi. Naomi is willful, sassy, strong and funny. She can do 48-piece puzzles, loves singing, dancing, and beautiful shoes. She fearlessly rides all the thrill rides at Disney World she can. Naomi was born with half a heart, called hypoplastic left heart syndrome. Naomi spent her first six months in the ICU and received a new heart during that time. Every few months, Naomi has to be seen by her transplant team for an echocardiogram, EKG, labwork, and a clinic visit. She is followed by a pulmonologist for respiratory issues, nephrologist for kidney issues, gastroenterology for feeding tube use, and infectious disease. To protect her heart, Naomi is immunosuppressed and takes many medications daily. When she gets sick, she often needs hospitalization to fight infections. 

Naomi’s mom Bethany says: "All of Naomi's medical issues were pre-existing. Without protection from the ACA, Naomi would be denied for health insurance, full stop. And the ACA's prevention of lifetime caps on care is what allows Naomi to continue to thrive. By the time she turned one year old, she had amassed over $2 million worth of medical care. The ACA is the dam between our family and the crushing tide of medical debt. Without it, Naomi will die for lack of necessary, specialized care. Naomi's dad and I both work full-time jobs to cover all of Naomi's bills, and to support Naomi's older sister, who has autism. Children with cardiac challenges often show neurological differences. Naomi has executive functioning issues and anxiety/PTSD, which impact her ability to learn and build relationships with her peers. She qualified for an IEP, and now Naomi receives weekly services at her school. She is learning strategies to stay focused and organized, and ways to calm herself, and how to interact socially. Without the therapy and education Naomi receives, she would not thrive as she has. Having the protection from IDEA and FAPE means Naomi can receive the help she needs to truly soar.”

Submitted by Bethany, Naomi’s mom.

Aiden

Age 5, New Mexico

Meet Aiden. Aidan has a big imagination and a contagious laugh. He loves acting and telling stories about villains and superheroes. He wants to be a #scientist when he grows up and has a particular fondness for squids and octopuses. Aiden has Autism, Asthma, and Lymphatic Malformation  

Aidan’s mom Hilary says: “Affordable health care is everything. Medicaid has truly been a lifeline for my family. It covered Aidan’s #NICU stay, his oxygen equipment, his inhalers, his #orthotics, his glasses, many surgeries and procedures, and multiple therapies. We live paycheck to paycheck and can not afford copays for all these things. If Aidan loses Medicaid, we may have to drop therapies that are helping him and forgo medical appointments and procedures due to unaffordability. It will also be more difficult to see his doctor for routine things like ear infections.”

Submitted by Hilary, Aiden’s mom.

Arabella

Age 10, Kentucky

Meet Arabella. Arabella has a gentle spirit and the biggest heart for helping others including animals. She loves reading, painting and crafts and is very talented. She loves to swim, play with her dolls, and spend time with family and friends.  Arabella has #MitochondrialDisease, #EhlersDanlosSyndrome, #Hypogammaglobulinemia, #Gastroparesis, #Constipation, #Asthma, Possible #seizures, #anxiety, #ADHD, #PTSD, #eczema, #Migraines, #chronic pain, and #dysautonomia. She relies on supplemental feeding by #gtube, takes many medications, therapies, and has subcutaneous immunoglobulin infusions weekly. She uses a #servicedog, #wheelchair for distances and hard days, a sleep safe bed, glasses, and AFOs.  

Arabella’s mom Tiffany says: “Without her Medicaid waiver I could not afford the things she needs or get her to her very specialized providers. We are barely making ends meet and getting what she needs as it is. She NEEDS insurance to cover her "Mito cocktail" though they currently do not and it can cost hundreds per month. Our entire goal is to maintain stability and prevent progression, without her therapies, physicians, and medications her disease could/would progress more rapidly and she would have less symptom management.  Her quality of life would suffer dramatically.  She has to have coverage with no caps and no pre-existing clauses. Arabella needs nursing care but the shortage in our state has left us without coverage for years and put her in unsafe situations.”

Submitted by Tiffany, Arabella’s mom.

GianRaul

Age 7, New York

Meet GianRaul. His friends call him G-mo! He is well known and loved in school. G-mo loves music, watching movies, playing with his younger brothers, and being held. GianRaul works really hard to hold up his head and communicate with his eye-gaze device. He enjoys being out and interacting with his community. GianRaul has Hypoxic-Ischemic Encephalopathy, Epilepsy, Cerebral Palsy, Cortical Visual Impairment, development delay, and Asthma. He uses a feeding tube for medicine and nutrition, a tracheostomy to breathe and a wheelchair to get around. He needs 24-hour nursing coverage and other medical equipment.

GianRaul’s mom Denise says: “In short, my son would die if he were to lose Medicaid coverage or the protections of the ACA. Private insurances refuse to pay for nursing care. Private insurance will only cover part of a wheelchair - my son needed straps on his wheelchair, would you buy a car without seatbelts? It's crazy the things private insurance deems NOT necessary! For the life of me I don't understand why our government thinks it's ok to NOT protect our children. My child's life matters. I don't understand why our government is sending the message that if you’re disabled your life has less value?!”

Submitted by Denise, GianRaul’s mom.

Bubba

Age 6, Missouri

Meet Bubba. Bubba loves to live his life like a daredevil. In the winter, he enjoys skating laps around an ice rink in his walker. In the summer, he loves kicking his legs in the pool or ocean. Bubba enjoys painting masterpieces for the people he loves, going crazy for Santa any time of year, watching trains, visiting giraffes at the zoo, Bubba’s zest for life is contagious. Most of all, Bubba loves being at school with his friends. Bubba also has Neuronal Migration Disorder with Cortical Malformation, Colpocephaly, Heterotopia, Pachygyria. Quadriplegic Cerebral Palsy, Intractable Epilepsy, and Asthma. He needs multiple medications, therapies, and specialists, uses a feeding tube to get medicine and nutrition and a wheelchair to get around. 

Bubba’s mom Blair says: “As a single mother, I struggled to find adequate care for my child when I needed to work, we were turned away from many other daycares because he required too much care. In order for him to attend a medical daycare, he needed Medicaid to receive the nursing hours for his care. After getting Medicaid, my child was able to thrive in a safe setting made for him., and I was also able to receive nursing care for Bubba in our home. Cuts to Medicaid would not allow my child to receive the adequate nursing care he needs nor the life saving equipment and medications. Medicaid for my child is everything. Without Medicaid, we would be homeless and bankrupt. 

For my child, being able to have access to an education is everything. Oftentimes, Bubba faces an assumption of incompetence based on his medical diagnosis. But he understands the world and has the ability to learn just as much as his peers. Having him in school allows him to have access to the necessary therapies that help him succeed in all areas of life. Additionally, the school is able to offer the necessary accommodations to allow him to succeed, although it has required me to fight quite a bit to get what he needs. I have fought tirelessly to have my child in an environment with his peers, allowing him to be pushed into a social setting that initiates a lot of strengths within my child. 

With Bubba being in a wheelchair, it has proven to make some places in the world inaccessible for us. We can’t go into some shops because of the steps, playgrounds are inaccessible and provide nothing for my child to play with, bathrooms are inadequate to change my growing child. While ada has helped make many places accessible, it is not often enforced, nor made a priority. There is an inability to change my child in public spaces due to a lack of large changing tables.”

Submitted by Blair, Bubba’s mom.

Rachel

Age 25, Pennsylvania

Meet Rachel. Rachel is an extremely social person with a very empathetic soul. She loves swimming and playing with her cousins, doing puzzles, volunteering at a senior living center, and petting her dog, Sonny. She also loves cooking, and is a huge help as my sous-chef! After 24 years of not having a diagnosis, Rachel received a genetic diagnosis of FBXO11 – but the kids with it are all very different. She has an intellectual disability, high blood pressure, and an extreme tendency to gain weight. She needs complicated supplement management to avoid oxidative stress, which puts her in a hallucinatory state that is very scary. We struggle because as an adult, Rachel does not have access to the same multidisciplinary medical teams she had at CHOP. The last time she had a medical crisis, we drove 400 miles to Cleveland Clinic. 

Rachel has a Community Living Waiver, but it only pays for a day program. She needs a bigger waiver to move out into the community. We have been on the Emergency Waiting List for the Consolidated Waiver for five years. As it is now, Medicaid is supposed to pay for Rachel's speech pathology. But the amount it pays is about $30/hour less than the going rate, so we pay out of pocket for that. If the ACA were repealed, we could lose our employer-provided insurance for Rachel. This means that Medicaid would become her primary insurance, which would leave her with less access to care and also cost the state a lot more money than it does as a secondary insurer now. We also struggle to find dentists that serve children and adults with disabilities. In our kids' case, dental care IS medical care, because dental issues can quickly lead to life-threatening medical issues for people unable to communicate when they have a toothache that might be an abscess or other infection.

Submitted by Samantha, Willa’s mom.

Willa

Age 7, Pennsylvania

Meet Willa. Willa loves camping; she likes singing songs by the campfire, watching for turtles, listening to the birds say goodnight, swinging in her hammock, swimming, and rocking in a canoe. She splits her musical tastes between bluegrass and Lizzo and will DJ for you using her communication device. She enjoys taking her dog Chloe for walks and going to Jazz in the Park. Willa has a mutation in her SCN2A gene which causes severe epilepsy and other neurodevelopmental disorders. To help her access the world she uses a wheelchair and an eye gaze activated communication device. She has a huge team at CHOP to help keep her healthy and needs frequent hospital stays.

Willa needs a 1:1 nurse to go to school and to care for her overnight while her parents sleep. Medicaid covers this service. Without nursing the life we live now would be impossible. Medicaid also covers Willa's specialized equipment like her $25k communication device and so much more. Medicaid allows our whole family to function in society. It allows us as parents to sleep at night, go on a date, and run a quick errand knowing Willa is safe with a nurse. It makes it possible for both of us to work outside the home. It gives Willa access to the technology she needs to communicate and thrive.

Submitted by Samantha, Willa’s mom.

Katie

Age 5, Nevada

Meet Katie. Katie is the sweetest little girl. She loves her family and being outside in nature. She loves to paint and color.  She loves music and books and taking walks. She loves her dog, Stella and being with her family. She has the best smile and gives the biggest kisses! Katie has Spastic Cerebral Palsy, Epilepsy, HIE and Developmental Delay. She uses a g-tube for nutrition and a wheelchair to get around. Katie loves attending school in a general education classroom with her peers where she gets the educational support, modifications, and therapies she needs to thrive.

Katie’s mom Brady says: “Affordable Quality Healthcare, for our family, means that Katie has access to her health care team and that it’s affordable. It means that we don’t have to choose a lower quality facility or hospital when she needs care. Losing the protections of the ACA would have a huge impact on our family. Katie is inpatient several times a year. She has multiple therapies per month, she receives Botox injections and has blood work done often. She is on many meds and with all of this, she would hit her lifetime cap pretty quickly and we would be in big trouble. She obviously has pre-existing conditions and losing that protection would mean that we would lose her coverage. Medicaid cuts would have a huge impact on our family! Kate relies on medicaid as her primary insurance and cuts to this program would mean that she could lose some or all of her benefits. She may miss out on therapies that she needs or certain medications that she needs because I wouldn’t be able to afford them.”

Submitted by Brandy, Katie’s mom.

Jonathan

Age 4, Oklahoma

Meet Jonathan. Jonathan has a huge heart and loves to cuddle. He’s very imaginative and loves to pretend he’s surrounded by the characters in his favorite shows. As an infant, Jonathan was diagnosed with a very rare form of cancer and needed a liver transplant. Today, his health is stable, but he will require a lifetime of care to protect his transplanted organ. He takes daily oral medications developed for adults with another type of cancer to keep his cancer in remission. Because there’s a lack of funding for rare pediatric diseases, his physician’s don’t know the optimal treatment length or what the long term effects will be. 

Jonathan’s mom Rebecca says: “Even with good employer-based health insurance, we still faced significant struggles and frustrations getting him the care he needed. We spent hours on the phone with insurance and in writing letters to appeal thousands in claim denials for basic care necessary to keep him alive. We were fortunate that a friend told us to look into a Medicaid waiver and he was able to be approved. My son's medical claims have tallied to around $3 million so far, and he will continue to require medical care throughout his life. Lifetime caps or restrictions on pre-existing conditions could mean significant restrictions on getting the necessary care. With state Medicaid and out-of-state restrictions, I am concerned about not being able to access the complex care from specialists that he needs.”

Submitted by Rebecca, Jonathan’s mom.

Shreve

Age 7, Tennessee

Meet Shreve. Shreve loves Legos, Hot Wheels, Marvel superheroes, his classmates, friends on the playground, and reading: he's been reading avidly on his own since the age of three.

Shreve was born prematurely at 26 weeks, weighing just one pound and four-tenths of one ounce at birth. Because of his chronic lung disease, he spent his first two years on a ventilator, and while he no longer needs the ventilator or his tracheostomy, he still requires oxygen support when sick and has over twenty diagnoses on his medical paperwork. He has made progress eating orally but still uses a g-tube for part of his nutrition, hydration, and daily medicines.

Shreve's diagnoses qualify him for an IEP in his local public school, where he receives push-in special education supports in a general education classroom, which are vital to his academic progress. Handwriting is especially challenging for him, but we have seen tremendous progress with the occupational therapy he receives. He typically receives physical and occupational therapy at school as well; however, the pandemic has required those services to be on hold.

We are so lucky Shreve was born at a time when the ACA protected his rights to healthcare. Shreve required nine months of NICU care at the start of his life, and without the ACA and Medicaid, he would have reached the lifetime cap on care long before his NICU discharge. Medicaid covered the cost of in-home nursing he needed for years after leaving the NICU, which would not have been covered by any employer-based insurance in the state of Tennessee. If we lose the protections granted by the ACA, the cost of his nutritional formula (over $500 a month alone), therapies, doctors appointments, and potential hospitalizations will swiftly bankrupt us as a family.

Submitted by Shreve’s mom, Laura

Claire

Age 4, Tennessee

Meet Claire. Claire is hilarious. She loves to make people laugh. She also loves music and playing in the water. Claire is very determined. At just four days old, she survived open heart surgery and now she has almost mastered walking. Claire has Cri Du Chat syndrome, congenital heart disease, hydronephrosis, silent aspiration, hearing loss, gross and fine motor weakness, and is nonverbal (though she knows many signs, and can comprehend anything said to her). She cannot walk independently so she uses a gait trainer and will eventually she will be fitted for a wheelchair.

Claire is in an inclusive pre-k program with an IEP (Individualized education plan) to make sure she gets speech, physical, and occupational therapy at school. She is THRIVING with her peers, and has two best friends and many therapists and teachers who adore her.

Claire’s mom, Jessica says: “We would face financial ruin without the provisions of the ACA. Claire’s medical bill from her first surgery alone was over one million dollars. She will need a lifetime of care and support.”

Submitted by Claire’s mom, Jessica

Calliope

Age 8, Pennsylvania

Meet Calliope. Cal loves music and movies and snuggling. When Cal was two years old, her family learned she had metachromatic leukodystrophy, a fatal degenerative neurological disorder in the same family as Tay-Sachs disease. Within 3 months, she lost the ability to walk, talk, and feed herself. Her toys were replaced by suction machines, CPAP, oxygen, cough assist, and a dozen medications to manage neuropathy, dystonia, seizures, GI issues, and secretions. Doctors told Cal’s family that she might not live past the age of six, but thanks to skilled nursing, hospice care, and her team of specialists, Cal is now 8 years old and laughs and smiles every day.

Calliope’s mom, Maria says: “Cal is alive today because of the ACA and Medicaid. The ACA's concurrent care provision is the reason she is alive today (and our family is not facing financial ruin). Medicaid provides her special wheelchair and the skilled nursing that make it possible for my husband and myself to work. No elected official who claims to be pro-life could oppose ACA and Medicaid for kids like my daughter, and yet, so many do.”

Calliope’s family created a video about their experience with hospice. You can watch it here.

Calliope’s mother Maria Kefalas also wrote an article for Slate about her experience parenting a child with terminal illness and what it has taught her about motherhood. Here is an excerpt from “Mothering Cal” – “Please don’t feel sorry for parents like me. Love us, support us, talk to us and even talk about us, but don’t feel sorry for us. My daughter is perfect, she will never hurt anyone; she only seeks loves and creates it. I mourn for a world that doesn’t see her perfection. It is not true that a parent should not have to go through what I am going through. Complacency and comfort are just illusions from the messy, chaotic pain of real life. We need suffering to experience joy, we require loss to know love. Would we worry and protect and care for our children if nothing bad could happen to them? Understand that my daughter’s impending death is tragic and I am filled with fury and rage over it, but, please don’t suggest that her death, and even her suffering, doesn’t make her life any less valid. Let me assure you, she will accomplish more her in her short life than many who squander their time on this planet.”

Submitted by Calliope’s mom, Maria

Olivia

Age 5, Texas

Meet Olivia. Olivia loves her dad's bad jokes, burping, going to school, snuggling up to a good cartoon, her best friend Sam, and cookies! She doesn't yet walk or talk, but she expresses her sass in many other ways and is the belle of the ball everywhere she goes. Her beautiful smile, infectious giggle, and desire to see it all keeps her family going.

Olivia has had spastic diplegic and hemiplegic Cerebral Palsy. She’s fully dependent on her family to help her with all her needs, and uses a stroller/wheelchair to get around. Even with the Americans with Disabilities Act (ADA) fully in place, her family finds many places are not as accessible as they need to be.

Olivia’s mom, Chelsea says: “It's a constant battle for us to over prepare when taking her out, making sure we account for many different situations and carry all sorts of equipment with her to make up for the lack of access.

School means EVERYTHING to Olivia. This is where she receives the majority of her therapy since our employer based plan doesn't cover much and we're on a Medicaid wait list for additional services. She has access to equipment that we don't have at home and has made more progress in school than we could have ever imagined!

If our family lost the protections of the Affordable Care Act, it would cut us off at the knees! Olivia's progress to become an independent member of society would be greatly diminished if we could no longer afford to get her the therapy and equipment she needs to live a fulfilling life. Currently, Olivia is on Texas’s 10-15 year waitlist for a Medicaid waiver. In the meantime, our family struggles to find ways to pay for her equipment and therapy costs.”

Submitted by Olivia’s mom, Chelsea