FENNER — Fenner resident Kayla Goodfellow, 19, recently launched a fundraising campaign to help pay for the medical treatment of her baby brother, Jaxon Wormuth, who has a rare genetic disorder called Hurler Syndrome.
Wormuth was born on April 18, 2023, to Amanda and Justin Wormuth of Fenner.
Hurler Syndrome, which affects an estimated 1 in every 100,000 newborns, is a disease in which the body is missing or does not produce enough of an enzyme needed to break down certain long chains of sugar molecules. Over time, the molecules build up in different parts of the body, resulting in various health problems.
“Symptoms can be physical deformities, cognitive delays, enlarged organs, blindness, among other things,” said Goodfellow. “Untreated, the average lifespan is 10 to 20 years old. A stem cell transplant will give him a chance to produce this enzyme on his own and live a relatively normal life.”
Wormuth’s treatment and surgery will be at New York City’s Memorial Sloan Kettering Hospital.
“Memorial Sloan Kettering is the best hospital for Jaxon because it is the only hospital nearby with the most experience with this rare genetic disorder,” said Goodfellow.
According to Goodfellow, who graduated from Cazenovia High School in 2022 and just finished her first year at SUNY Oneonta, her mom, stepdad, and two-year-old half-sister will be staying in New York City with Jaxon for a minimum of two months.
“During these times, we are in need of financial help with our typical bills as well as Jaxon’s medical bills,” she said.
To help raise funds for her brother’s cause, Goodfellow has created a GoFundMe page, organized a volleyball tournament fundraiser, and coordinated a can and bottle drive.
The family is hoping to raise a total of $40,000 by July 7, the date Wormuth’s treatment begins.
“Between GoFundMe and cash donations, we are already halfway there,” Goodfellow said on June 8.
The volleyball tournament event, which also featured cornhole, a bake sale, a cookout, a 50/50, raffles, and music, was held on Sunday, June 11 at Lakeside Park.
That day, Goodfellow reported that the event raised just under $2,500.
Through June 17, community members can drop off their cans and bottles at Caz Cans at 2451 Route 20 East and say, “for Jaxon,” to donate their deposits to the family. Caz Cans is open Tuesday through Friday, 9:30 a.m. to 5 p.m., and Saturday, 9 a.m. to 3 p.m.
To contribute to the GoFundMe campaign, search for “Jaxon’s expenses for a stem cell transplant” on the GoFundMe website.
