Rescheduled Old-Timers game is Sunday
A Summit Hill toddler will be the guest of honor Sunday at the Russell “Bups” Ahner Memorial Old-Timers Softball Game in Franklin Township.
The game, scheduled to begin at 2 p.m. at Phifer’s Ice Dam, is rescheduled from June, when weather postponed the event.
Members of the Franklin Township Athletic Association will battle representatives from Lehighton and Franklin Township fire departments to benefit Jaxon Goss.
Since birth, Goss has battled GM1 gangliosidosis, an autosomal recessive lysosomal storage disease that robs children of nearly every skill and bodily function required to live.
An insufficient amount of the enzyme beta-galactosidase is produced by the body. The dysfunction results in cell death, particularly in extremely fragile neurons and spinal cells.
“Basically the brain is poisoning itself,” Jaxon’s mother, Jessica Szoke, said of the disease. “Jaxon has the infantile stage, which is the most common, and kids are usually given a few months to three years so he’s made it a lot further than most and we’re extremely optimistic about that.”
Jaxon’s symptoms include seizures, for which the family uses CBD oil and a ketogenic diet, and breathing problems. He has two different pieces of equipment specialized for airway clearance that he uses daily.
While research in the areas of enzyme replacement and gene therapy for the condition is ongoing, it has not yet advanced to human trials.
“We’re very hopeful that is coming,” Szoke said. “The nonprofit Cure GM1 has been a driving force behind funding for gene therapy.”
According to event organizers, the game normally brings in more than $2,000 each year. The Franklin Township Athletic Association gives $1,000 to the child up front, plus the money brought in by a Chinese auction and bake sale.
“We are really thankful they are doing this for our family,” Szoke said.
Baked goods and basket raffle donations are appreciated. They can be dropped off at Phifer’s Ice Dam on Sunday between 9 and 11 a.m.