HELP CONTINUE ALEXA’S ADVENTURES

Anybody who knows our family, knows we are always on the go. Between appointments, therapy, church, and extra-curricular activities, we’re in the car a lot. Did you know that accessibility-adapted vehicles are not considered medically necessary? There’s also no help through insurance for handicap vehicles. We knew they are expensive but honestly had no idea just how expensive. Our daughter, Alexa, is getting heavier and harder to lift in and out of our current van. She’s fed through a G-Tube, which is a surgically-placed gastronomy tube to her stomach. She is also nonverbal and non-mobile, has severe epilepsy, and has developmental delays. She requires 24/7 caregiving. Even with these struggles, everyone who meets Alexa knows that she’s full of life and energy! She loves people, being out and about, and the crazier, the better. She has a need to be around people.

Our family has been through a lot. Our daughter, Holly, passed away at only two years old without a diagnosis. Every bit of care for Holly was a fight because we didn’t have a diagnosis to warrant why she needed something. Because of Alexa’s prognosis at a year old, we have held off buying a handicap vehicle. We were told she would likely only live to be 3, but Alexa is now 7 years old and thriving! Based on Holly’s life, it made sense. Our hearts couldn’t handle the thought of buying a handicap vehicle only to return it a couple years later. But we’ve reached a point where it has become necessary to have a converted vehicle to save our backs and keep her active and healthy! With Alexa, it’s been much easier to get care because she has a diagnosis of Congenital Disorders of Glycosylation (CDG), and it’s important to our family to be strong advocates for families struggling with the same condition.