Eliana (Arlo) Erickson Paul

Update!

Update: I recently found out I was originally misinformed about insurance coverage. The steps have been taken and the chair has been approved through insurance. What I’ve funded so far will still go to good use! Rest assured. Example: LapStacker that’s listed as well as other useful adaptive accessories like a phone mount, etc. OR, there’s a chance this could fund a lightweight electric wheelchair for the hills in town where I live. We are figuring out what makes the most sense.

I’ll be either updating the goal or disbursing the funds and closing this campaign when we know more of our game plan after discussing what makes the most sense.

(Original goal/info)

What is this for?

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.)