Evie

Evie

Age 7, Ohio

Meet Evie. She’s energetic, expressive, funny, and fearless. She’s a dynamo gymnast, a natural horseback rider, and can break it down on the dance floor like no one else. She loves new friends, fashion, popcorn, parties, fruit snacks, playing with her dollhouse, helping her mom, giving hugs, and putting her big brother Jack in headlocks. Evie has advocated in her local Senator’s office in Cincinnati and visited all of her political representatives in D.C. Evie is tiny but mighty!

Evie has Down syndrome, sleep apnea, and strabismus and gets lots of sinus, ear, and eye infections due to her small airways. She’s had 7 surgeries so far, including: open-heart surgery, surgery on her airways, and ear tubes. She uses a CPAP, wears bifocals, takes medications, needs frequent sleep studies, and has had 4 sets of ear tubes.

Evie is in kindergarten in an inclusive public school classroom where she’s making friends and gaining skills to help her achieve independence. Her individualized education plan (IEP) makes sure she can access curriculum by providing the support and accommodations she needs, including: speech therapy, occupational therapy, visual therapy, physical therapy, reading intervention, and an aide at school.

Evie’s mom, Jen says: “Luckily we have good health insurance through an employer, but I worry about protections for pre-existing conditions. Without the ACA, we would likely hit our Lifetime cap very soon. Since both my children have disabilities (Evie’s brother has Autism), they’ll need Medicaid to live in their community when we’re gone. My kids are getting a great education in their public schools and I know that with support they can be gainfully employed, tax paying citizens. But, without Medicaid, my children may one day lose the independence we are working so hard to teach them, and they are working so hard to gain. Like most Americans, if we lost our insurance we would be bankrupt. We planned and saved before we had kids, but the financial costs of having disabilities are insurmountable.”

Submitted by Evie’s mom, Jen