Desmond Enrique Deschenes

Desmond is a 7 year old boy that just started first grade. He was born with an ultra rare TUBB2B genetic mutation. This caused Demond to have multiple brain malformations, daily seizures, 24/7 nursing needs, and a developmental delay. Since he was born he has spent a total of 376 days in the hospital due to the many complications from his disease. Desmond is fully dependent on a wheelchair and caregivers to move around. Our dream is for him to gain as much independence as possible.

Desmond is an active member of his community and enjoys walks outside, community events, and spending time with his friends. When Desmond was born we were told he would most likely have no purposeful movement. We did not give up on him and got him involved in every therapy we could to help him with continued growth. Desmond had made amazing progress in his own time but we have limitations with the equipment we currently have.

Over the summer Desmond was able to participate in Lokomat Walking Therapy. He has gained strength in his legs from this therapy but it was only for 12 sessions. We are trying to raise money for a home Trexo Robotics gait trainer to continue walking therapy with Desmond. Insurance will not pay for this piece of equipment that we desperately need to help Desmond learn to walk so we are reaching out to our community for help. It is hard for us to ask for help from others but we would do anything to help Desmond continue to make progress.

Thank you for your consideration and taking the time to read Desmond’s story!