Running, crunches, sit-ups. 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, Teri Fox, to start the Sebastian Velona 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. “He was just going down hill. We were scared and he wasn’t the same.”
After Velona underwent DNA testing, he was diagnosed with Batten disease CLN8.
The fatal disorder, a regression disease, is expected to take away Sebastian’s life before he turns 20.
However, Fox looks towards the new foundation, founded 4 months ago, as a beacon of hope for her son and others with Batten disease CLN8.
“I’m protecting my son, he’s my baby,” Fox said.
In its first few months, the foundation has raised $220,000. They put on the Healing Hugs Festival on Saturday in hopes of adding to that number.
Afterburn Fitness hosted various workouts, cyclothons and challenges to raise money for the non-profit, as well as provide entertainment, games and festivities.
“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.
“I want to do everything I can in my power to help them achieve their goal, because I can’t imagine their situation.”
The nonprofit aims to raise over $3.5 million for research and gene therapy for the fatal disorder.
To donate to the Sebastian Velona Foundation, visit their website.
