Please help Hailey's wish come true!
Hailey is an incredibly sweet teenager who always has a smile on her face despite her challenges. She was diagnosed with an unspecified Leukodystrophy at age 4. Leukodystrophy is a progressive neurological terminal brain disease. Along with leukodystrophy Hailey also has a seizure disorder and is in heart failure and recently had a second pacemaker surgery. We are working with Hunter's Hope to make this fundraiser successful.
Due to Hailey’s permanent disability and declining health/weakness, Hailey is unable to be transported in a non-wheelchair-accessible vehicle. Due to her age and size, this is difficult on us as her parents as we currently lift Hailey from her wheelchair to her valet seat in our current vehicle. Hailey doesn't have truck control, nor can she adjust herself or bear weight on her legs. She has been non-ambulatory for 5 years. We have been lifting her from her wheelchair for any position changes. We try to ask for anyone around to assist in the lift but it is mostly Hailey and her mom when Hailey goes anywhere. Just going to school and back would be 4 lifts. Hailey's dad works in a different city and has had to be late at times when he helps to get Hailey to school. Hailey goes to the same school where her mom works. Hailey isn't able to take the school bus as her mom works later than the bus would arrive at home, so they go and come back together. We currently have no respite or nursing hours. Hailey is nearly the size of her mom and weighs well over 100+ pounds and provides no weight bearing or assistance.
We take Hailey to and from school and to and from medical appointments. 90% of her appointments are also out of state. We often visit a Leukodystrophy Care Network Center 400+ miles away from home every 3-6 months. After a certain age and weight car seats are not available. This lifting in and out of the vehicle happens several times a day with mostly her mom being the one doing all the lifting and straining. She has been with back pain for a few years now.
We also live where temperatures reach well over 100+ degrees in the summer and Hailey has a heat restriction with her pacemaker. We want Hailey to be able to be placed in the vehicle safely and also be comfortable.
We are in the process of getting a tilt and space wheelchair to also provide more support. A wheelchair accessible vehicle would be our solution. But the astronomical price seems unobtainable at this point. We are at the point where we wouldn't be able to convert our current vehicle because it has too many miles on it.
Time is not on our side and we hope to get any help we can with this challenge we are facing.
Here is the link to donate: https://www.classy.org/fundraiser/5798259
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