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.
While our primary focus right now is a vehicle, we will eventually also need a lift to get her in and out of the bathtub or shower, as well as other necessities that insurance says aren’t medically necessary. Both of these things will help her to stay healthy and safe, while saving our backs. Helping us stay actively involved in her care is our priority. We’re always so nervous that we could drop her or trip carrying in and out of the van. Carrying her around our house is becoming harder too.
This is where you come in, we need your help! A handicap vehicle costs roughly $50,000 used and in good shape! We bought our Honda Odyssey to adapt when we were ready, but then found out that for safety reasons, we can’t adapt our vehicle. It’s considered too old, at only 4 years old!
Please help us get Alexa’s story out there and keep her wild personality and need for adventure! In order to continue therapy and being together as a family, we most urgently need an adapted vehicle. By sharing our story and donating, you are giving Alexa a better quality of life and allowing her to continue things like therapy that are clearly enjoyable and beneficial for her on so many levels.
Thank you!
Family and friends of Alexa Linthicum are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.
Alexa has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
