Gym hosts fundraiser to find cure for disease
Shali Borkowki started her Saturday morning off with some heavy conditioning, but it was for a cause.
“No one would ever want their child to be suffering,” Borkowski said mid-workout. “If we could help... any other child that might be suffering from this in the process, that’s a win.”
Shali and Jeff Borkowski have been friends with Teri Fox for years, a mother with a son suffering from Batten disease CLN8, a fatal and degenerative neurological disorder.
That is why the Borkowski’s spent their morning at Afterburn Fitness during the Sebastian Velona Foundation’s Healing Hugs Festival.
Thirteen-year-old Sebastian Velona was diagnosed with the deadly disease five years ago, which prompted his mother to start the foundation.
“We were scrambling, looking all over the world for a cure, for treatment, anything,” Fox said.
Fox and her family struggled with diagnosing her son after he suffered from several seizures, experienced a decline in cognitive growth and a loss in vision.
“We needed to find out was wrong with our son,” Fox said.
After Velona underwent DNA testing, he was diagnosed with Batten disease CLN8.
The disorder, a regression disease, is expected to take away Sebastian’s life before he turns 20.
However, Fox looks towards the new foundation, founded four months ago, as a beacon of hope for her son and others with the disease.
In its first few months, the foundation has raised $220,000.
Afterburn Fitness hosted various workouts, cyclothons and challenges to raise money for the non-profit.
“I can’t imagine, having children myself, having to wake up everyday knowing that I may be one day closer to never seeing my child again,” Adam Hatley, general manager of Afterburn Fitness, said.
The nonprofit aims to raise over $3.5 million for research and gene therapy for the fatal disorder.