Alex Starratt has a disease called SMA, an incurable neurodegenerative disease, and now his family have turned their attention to helping both Alex and others like him. Heather Yourex-West reports.
The second grader enjoys playing sports too, focusing on activities he can do even though illness has made many aspects of life very difficult. “Alex was diagnosed just before his third birthday with Spinal Muscular Atrophy,” said his mom Jennifer Hayes Starratt. “He’s missing a gene that produces a protein and because of that he suffers from muscle weakness and muscle wasting.”
In just a few short years, the foundation has already raised tens of thousands of dollars in support of research at the University of Calgary, but the family is looking to do more. Next month, they’ll host the first “Touching a Nerve” Gala, with hopes that money raised will help make a difference for the thousands of Canadians who suffer from these incurable diseases.
“I think that when it comes to neuromuscular diseases, because we’re seeing so many things in terms of drug trials, in terms of genetic therapies, in terms of other physical therapies…we feel like we’re close.”