I’m raising money to get a wheelchair-accessible van for my son, who has early-onset FSHD (Facioscapulohumeral Muscular Dystrophy Type 1) and relies on his wheelchair every day.

My son is unable to walk or bear any weight, so every transfer depends completely on me. He also has brittle bones, and even small bumps have caused fractures in the past, which makes lifting and transferring him even more risky.

Every time we leave the house, I have to take apart his wheelchair by removing the wheels and battery, lift him into the car, and then load everything separately. I’m only 4’9, and my son is taller than me and weighs about 115 pounds. Because he cannot assist at all during transfers, lifting him is extremely difficult and physically exhausting. As he grows, it’s becoming even harder and less safe for both of us.

We have frequent appointments, including therapy every Thursday and Friday, as well as ongoing care at Children’s Hospital with multiple specialists such as the MDA clinic, endocrinology, cardiology, and the infusion center where he receives treatments for his brittle bones every few months. Getting to all of these appointments safely is a constant challenge.

A wheelchair-accessible van would allow him to safely and comfortably get where he needs to go without all of this. It would eliminate the need to break down his chair and lift him every time, greatly reducing the risk of injury and making daily life safer and more manageable.

These funds will go directly toward purchasing a reliable wheelchair-accessible van so he can have more independence and a better quality of life. This is something we need as soon as possible.

Having this van would truly change everything for us. It would give him freedom, dignity, and the ability to experience more of the world outside of our home. As a parent, all I want is to make his life easier and keep him safe.

Any support—whether it’s a donation or simply sharing this—means more to us than I can put into words. Thank you for taking the time to read our story and for helping us get one step closer to this life-changing goal.