TL:DR:

I need a new power wheelchair, one that will support my body and allow others to safely help me. It costs $29,500. Here is a link to it so you can see what it is: https://amylior.com/en-ca/power-wheelchairs-alltrack-series/

For more details, read on:

Dear Friends,

As many of you know, I am living with ALS. At this point in my journey I am unable to move most of my body. I spend the majority of my time in a big blue recliner in my living room. A ceiling lift transfers me from it to a commode, and from it to a wheelchair to the bed. Travelling outside my house has become really tough. Fortunately, most of my care is provided in my home.

We call my current wheelchair Roxy. She was loaned to me by the ALS Society. Roxy is a 350 lb beast. She is built like a tank. We have wrapped her hard metal edges with pool noodles to protect my legs from being bruised by bumping into the leg rests, and we have added supports for my elbow to help me control the joystick, and a travel pillow to keep my head supported.

Recently I was able to acquire a wheelchair accessible van for a reasonable price. It allows me to travel a few blocks from my house once a week to take a bath at the local hospital. This has been wonderful. It is also a relief to know that we have a way to transport me without the increasingly precarious maneuvers that were required to slide me into a vehicle.

My challenge now is that Roxy is too high to fit nicely into the van. We have to fold me forward to lower my head to get through the door. Roxy is not able to be set up with attendant controls to give my helpers ease of access in helping me. Also, Roxy is not especially comfortable. Sitting for more than an hour is unbearable.

Here is what I would love. I would love to go for a drive, to see a play, to visit a friend, or have a picnic at the lake. I would love to help my helpers' job be easier. I would love to not make my mom's white hair any whiter. To do this, I need a different chair.

I was astonished to learn that such a chair can cost as much as $40,000. My hope was to be able to use my insurance money to fund a new chair and then be able to donate it to the ALS Society when I no longer need it. Unfortunately, the $7000 that my insurance will pay does not nearly cover the exorbitant cost of such a device.

I have been very blessed on this journey to be provided with everything I have needed to adapt to the ongoing changes ALS has presented. I have no doubt we will find a way to work with this challenge as well. And if it were possible to acquire a power wheelchair that I could travel with ease in, it would bring me so much joy. You can imagine the beaming smile on my face that comes from such a sense of freedom.

The wheelchair that fits all the criteria for my current situation will cost $29,500. The ALS Society can cover 20% through their cost share program, and I am able to cover $10,000. That means I need to raise $13,600. If you feel inspired to contribute to this endeavor, thank you. If you have philanthropic friends who might like to contribute, please share this with them. I am so grateful for all your love and your support. With the help of many a heavy burden can be made light.

All my love and gratitude,

Shauna