Rare Disease Report

High School Wrestlers Raise Money for Sanfilippo Syndrome

JANUARY 10, 2018
Kaitlynn Ely
After discovering the fate of a former teammate’s child, wrestlers at Wells High School in Maine are using their sport as an incentive to raise money for a worthy cause.

Spencer Smith is the 3-year-old son of Alli and Nate Smith, a Wells alum who won over 100 matches between 1996 and 2000. When Spencer was 1 year old, his hearing began to regress and his doctors recommended genetic testing. The diagnosis was Sanfilippo syndrome: a rare, incurable neurological disease that only affects 1 in 70,000 children.

Sanfilippo syndrome can only be developed if both parents are carriers of the recessive gene. In Nate and Alli’s case, neither were aware they carried the trait.

Patients with Sanfilippo lack the enzyme that breaks down large sugar molecules produced by the body to build tissue and skin. Children like Spencer are unable to break down the molecules which causes cellular waste to build up in the brain. This causes progressive dementia, aggressive behavior, hyperactivity, seizures, and deafness. Because the life expectancy for patients with Sanfilippo is approximately 15 years, the disease is often referred to as “childhood Alzheimer’s.”

Scott Lewia has been the wrestling coach at Wells for 25 years. After learning about Spencer’s condition, he was motivated to help out the former wrestler: “I’ve been doing this a long time. These are like my boys and I wanted them to know that no matter how long it’s been, we’ll always have their back.”

The rare disease is too uncommon for pharmaceutical companies to fund research, so Wells wrestlers have brought it upon themselves to raise money for Spencer. For every match win that each wrestler earns, donors agree to give back $1 to $3 to the not-for-profit Cure Sanfilippo Foundation. The goal of the team is to receive $2,500 in donations that will go towards research and awareness.

Members of the team wear coordinating shirts to all matches, each with a picture of Spencer’s face below the phrase “My Pal Spencer”. This is in an attempt to bring awareness to the spectators about Sanfilippo syndrome, with the goal of attracting potential sponsors throughout the season.

Wells Wrestlers, like Drew Peters, find that using their wins for charity is benefitting the Smith family and the entire team. “I just made money for a kid who has a disease and he’ll never have the chance to do what I’m doing because of that disease,” Peters said. “Me winning and giving money for the cure makes me feel good, but it also gives me drive to win more.”

For more information on Sanfilippo syndrome and to donate in Spencer’s name, visit the Cure Spencer page at the Cure Sanfilippo Foundation website.  

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