Help George tackle mountains & carve his own path

Hello Friends!

Lauren Dempsey here, wife, mom and special needs advocator for George, who has an ultra-rare form of Spinal Muscular Atrophy (SMA).

George was born with special needs but wasn’t diagnosed until he was 1. After countless tests, we found out he has X-Linked Infantile Spinal Muscular Atrophy on his UBA1 gene. Not only was it SMA but it’s so rare that there are only a handful of known cases worldwide, historically.

Treatment : None – at all. All treatment for SMA focuses on the SMN gene, not the UBA1 gene.

Prognosis : Terminal by age 2.

George has continued to smash through every single barrier in front of him. He is HAPPY and determined to defy the odds stacked against him. George is now a thriving 4.5-year-old who attends school, learns sign language and melts the hearts of everyone he comes in contact with.

Raising a child with significant needs such as George, all while continuing to help support the things he wants to do is a huge financial burden. From equipment, doctors appointments, adaptive clothing, lengthy hospital stays and modification to our house/play structures - it’s A LOT. I am proud to say that we have managed and navigated all of this on our own so far, however, we have reached a point in George’s development where his desires and needs outweigh the coverage and ability we have to provide all of that to him.

George had the opportunity to trial TREXO Robotics. A device that he can be supported in and allows him the ability to help walk with the “robot legs” (as George calls them). This was such an incredible experience for George. For the first time in his life, he was able to stand, have his feet be in contact with the floor, move his legs and advance - walking. His face lit up and he took off through the entire office and warehouse. Not only is this a huge opportunity for George but it also provides his legs with stretches and the movement/structure required for bone development. It helps to work out and loosen the contractures he has in his knees and ankles. It allows him to walk and interact with kids at their height, all while building his strength in a way that no other device would ever allow.

The TREXO device is locally made here in Ontario and costs $40,000.

I am humbly asking for your help in supporting George to live to his full potential. All funds raised will go to the following:

1. Purchasing the TREXO (Robot legs)

2. Post-medical trial funding we are currently negotiating

3. RSV vaccine fight – obtaining it and getting the "special circumstances criteria" changed

I appreciate all your support and look forward to seeing how George can change the system for good and give hope to the kids with this rare disease who come after him.

With love,

Lauren