Living with EDS disease: how a wheelchair changed my life

Ali is a 12-year-old girl living with EDS and another syndrome called Positional Orthostatic Tachycardia Syndrome (POTS). After meeting her and her mom through the Pediatric Pain Foundation, we worked with her team to help her get the custom manual wheelchair that would help her live her best life. She shares her experience and what a difference it has made for her.

Hi I’m Ali! I have EDS & POTS and I recently got a Motion Composites APEX wheelchair, it has changed my life.

In order to celebrate, I made myself an independence day where we picked strawberries, and it was all in grass and sand! Which is something that wasn’t possible with my old wheelchair. We also went to Disney, and there, I was able to independently push myself uphill, downhill, during sharp turns, long distances, and short. It also doesn’t hurt my back and legs at all. When I wasn’t self-propelling it was so lightweight it was a breeze for my parents. Since it’s so lightweight and easy to control my mom can even push with one handle and walk next to me so we can have a nice conversation without hurting my neck looking behind me.

This wheelchair has given me more independence than I could have ever hoped for! I went out for the first time only with my friends in my wheelchair and it was a great experience I was super independent we did lots of walking (wheeling for me). We even went in the grass, which was never possible in my old wheelchair, and everything was great! And most importantly, if you think a wheelchair will help you go for it! There’s nothing wrong with getting the help/mobility aid you need, no matter your disability or if you are ambulatory or not. It completely gave me my freedom back and my confidence to go out in public with no embarrassment and to be in a wheelchair without pain!

We really want to thank Ali for sharing her story with us. If you haven't already, please read our interview with Ali's mother, Debbie Kadet, to learn more about the family's story and life with Ehlers-Danlos syndromes. If you want to learn more about EDS, you can read this article written by Education Specialist Christie Hamstra.

About Motion Composites

Motion Composites has an international reputation as a leader in the design and manufacture of ultralight manual wheelchairs.