I’m raising money for the nonprofit Help Hope Live to fund a custom manual wheelchair for my episodic weakness/paralysis associated with Functional Neurological Disorder (FND) as well as symptom flare ups from other conditions.
The items that I’m fundraising for are as follows:
TiLite Z with add-ons $2,472.59
LapStacker $141.95
Total: $2,614.54
My story:
When I was born, both my hips were dislocated for a little while and whenever I would get upset as an infant, my fetal position was different than most. I would go into a backwards looking splits and dislocate them again. There were many other signs something wasn’t right. At around 3 years old it was discovered that I had a genetic condition (1p13.1-1p12 Duplication) so rare that they didn’t know of anyone else with it. Way, way later on, I was diagnosed with Hypermobile Elhers Danlos Syndrome (hEDS) as well, which explained the dislocations and subluxations.
Somewhere around the beginning of 2022, I was walking around the mall when suddenly the right side of my body went weak. We went to the ER thinking it could be a stroke. A little while before that, I kept having little blips in my consciousness. The weakness stopped later on in the ER and they ruled out a stoke and the causes. Their guess was absence seizures with “Todd’s Paralysis” afterwards. They did an EEG and found nothing.
In June of that same year, I suddenly lost all movement and some feeling in both legs. For 3 days I stayed at Colorado Children’s Hospital while they tested me for tons of things. After I slowly regained movement and sensation, I had full on seizure. The doctors saw that it didn’t resemble any type of epileptic seizure. They finally diagnosed me with Functional Neurological Disorder with functional weakness/paralysis and non-epileptic seizures.
Even with having tons of episodes of weakness all the time, they would not prescribe a wheelchair. To this day, I’ve relied on secondhand wheelchairs. The first was too small and broke eventually, and my current one is too big and is at least 7 years old. The original owner of the chair used it full time for 5 years. The average safety lifespan of a custom manual rigid chair is 5 years for full time users. This is older than that and is pretty worn down, so a new one is needed on the sooner end.
Other info:
(Donations are tax deductible for contributors and funds will only be used to cover medical and related expenses.)
