It’s not often an internet video takes my breath away. But Dominic and his mother, Stephanie, did just that.
Dominic is a smiling, strong, two-year-old boy in Moncton. He is also struggling.
In January, Dominic was diagnosed with Type 2 SMA (Spinal Muscular Atrophy).
This is a progressive neuromuscular disease that has stopped Dominic from being able to stand or to crawl — things he used to be able to do.
SMA affects as many as 1 in 6,000 people and is the most deadly genetic disease for children.
As Stephanie explains, “In Dominic’s case, his muscles are too weak for him to stand or crawl which are things he used to be able to do. Most people with SMA die from respitory complications since they can not fully expand their lungs and breath primarily with their diaphram. I can not put into words how difficult it is to have to witness the progressive nature of this disease. Dominic’s perfect little body is deteriorating little by little as he gets older but was born perfectly healthy.”
The family is working to provide Dominic with the equipment he needs to be healthy and to thrive — wheelchairs, standers, therapy pools, orthoses, and more. They are also holding onto the hope that a treatment, perhaps even a cure, could come within Dominic’s lifetime.
“We hope that he will have a chance to travel in order to participate in a clinical trial that will stop the progression of this disease and hopefully help him maintain or even improve some of his strength before too much damage occurs,” shares Stephanie. “He is a happy, charming boy who makes everyone laugh. He deserves a chance to just be a boy! To run, throw a ball, and climb monkey bars”
Thank you for sharing your story, Stephanie and Dominic. I hope to see more videos of Dominic’s lovely smile soon!