Franklin Old-Timers honor boy, 3, with rare disease

For a brief time Sunday afternoon, Jaxon Gross can take his mind off the rare disease he has battled since birth and enjoy his time in the spotlight.

The 3-year-old from Summit Hill will be the guest of honor Sunday at the Russell “Bups” Ahner Memorial Old-Timers Softball Game in Franklin Township.

The game, pitting Franklin Township old-timers against their counterparts from Jim Thorpe, is held each year to raise funds for local youth dealing with medical issues.

It is scheduled to begin at 2 p.m. at Phifer Ice Dam Park.

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. Jim Thorpe old-timers also make a donation, with money coming from the Jim Thorpe National Bank and anonymous patrons.

“We are really thankful they are doing this for our family,” Szoke said. “This has been a very trying time for us emotionally.”

Szoke also credits community organizations including Turn To Us, based in Jim Thorpe, for their assistance. The nonprofit organization assists individuals and families feeling the impact of a major or chronic illness.

In keeping with tradition, Gross will get a ride to the field on a Franklin Township Fire Company engine.

“Jaxon is aware of what is going on around him and he enjoys going for a ride in my truck, so I think he’ll really enjoy the firetruck ride,” Szoke said.

A raffle, bake sale and concession stand will also take place Sunday at Phifers.

“This is going to be a special day for Jaxon,” Szoke said, “and if it wasn’t for the generosity of everyone involved this wouldn’t be happening for him. We would really like everyone involved in this event to know how grateful we are to them for making Jaxon this year’s recipient.”