fundraising to support Alex & SMA costs
I have a rare disease called Spinal Muscular Atrophy type 2 which means I require a power wheelchair with a lot of features to live comfortably & independently.
Recently my family & I have been struggling more than we ever have financially and emotionally. It’s been very hard on us and some of you might have noticed a lack of my usual social media presence. This is because I’ve been dealing with a family emergency and since I’ve gotten back to Chicago I’ve been non-stop working to try and offset medical bills + expenses all while I’m trying to take care of my own health.
My mom, who is my roommate and splits my rent expenses with me is not well and had to leave her job to take care of her health. This has been very hard for us but her health is always going to be the main priority.
I’ve been receiving outstanding wheelchair repair bills for $3,500 that I’ve been fighting with the insurance company for months to no avail and am in threat of getting sent to collections. On top of that, my wheelchair repair place refuses to answer the phone or return my calls. We’ve left them 10+ messages with no reply. This bill has been a huge stressor and because of this bill I haven’t been able to get new wheelchair repairs for over a year and my wheelchair is 10 years old. I’ve needed a new wheelchair elevator for 4+ years that my insurance will not pay for as they don’t consider it medically necessary. It costs around $3,000 for the part + the labor. It’s been hanging on by a thread for those 4+ years and needs to be replaced. Without it, I cannot eat, leave my apartment, reach my desk to work, press elevator buttons, pick anything up, etc. At this point I’m scared it’s going to break all the way any time now as my chair has been jostled from being transported on airplanes.
I’ve met an amazing wheelchair repair guy who runs his own operation when he replaced my joystick that the airline broke recently. I received a text from him this morning that he went ahead and ordered me new tires and a USB on his own dime so I don’t have to go into winter with bald tires. My wheelchair is my legs and people like him TRULY understand how much that means to me. Without my wheelchair and any feature that it has, I’ll be bed ridden.
Any help during this difficult time to help with my wheelchair repairs + expenses is appreciated more than you know.