Wells High School wrestlers solicited pledges of donations earned through their victories in matches to support a former wrestler and his son, who has a rare neurological disease.
The wrestlers at Wells High School don’t know Nate Smith or his 3-year-old son Spencer well, but they still think of them as family.
They know Nate Smith wrestled at Wells a generation ago and that Spencer needs their help.
“It’s really all about knowing that he’s a former wrestler and the bond that you make when you’re wrestling,” said Wells senior Sean McCormack-Kuhman. “You look out for each other. They obviously needed help and we thought it would be a great thing to support them.”
The Wells wrestling team has been raising money this season in honor of Spencer Smith, who has been diagnosed with a rare, incurable neurological disease known as Sanfilippo syndrome. Sanfilippo is often referred to as childhood Alzheimer’s disease because it causes cognitive regression, loss of skills such as talking and walking, and eventually death, according to the Cure Sanfilippo Foundation website. Life expectancy is roughly 15 years.
Each wrestler has solicited pledges of donations earned through his victories during matches. As a team, Wells expects to raise over $2,500 for the not-for-profit Cure Sanfilippo Foundation and considerable awareness about a disease that affects 1 in 70,000 children.
“You’re realizing that every win I get I have a chance to help make the cure happen,” said Drew Peters, another senior wrestler. “I mean, hopefully it can happen not only for Spencer but for anybody else with the disease. It’s one person for us, but it affects so many people across the world.”
‘ENJOY THE MOMENTS THAT YOU HAVE’
The Smith family, from left, Nate, Spencer and Alli, seen in November on a family trip to Florida.
Spencer Smith and his parents live in Lexington, Massachusetts. Alli Smith, who met Nate at Bowdoin College in Brunswick, halted her career as a third-grade teacher to be a stay-at-home mom for their outgoing son, who loves dogs and giving hugs. She coordinates Spencer’s visits with speech, physical and occupational therapists and specialized day care for the hearing impaired.
“We felt it was best for Alli to stay home because of the services Spencer needed and because we really don’t know how long we’ll be with him,” Nate Smith said. “The reality as of today is there is no cure and these kids, they start deteriorating, so in some aspects every birthday is kind of sad. But you have to live one day at a time and enjoy the moments that you have and pray for a cure. And hopefully there’s a cure before it’s too late.”
Spencer suffered hearing loss between the ages of 1 and 2 and now uses hearing aids. His audiologist suggested genetic testing that led to the Sanfilippo diagnosis.
“He’s delayed because of his hearing loss, but right now he isn’t showing any regression, which is great,” said Nate Smith.
LITTLE RESEARCH DONE ON THE DISEASE
Sanfilippo syndrome is a recessive genetic disorder, meaning afflicted children inherited the abnormal gene from both parents. Neither Nate nor Alli had any idea they were carriers for Sanfilippo before Spencer’s diagnosis. Now they know there is a 1 in 4 chance any child they have will be born without a key enzyme needed to break down complex sugar molecules, the Cure Sanfilippo Foundation website says. The sugars are produced by the body for a variety of purposes, including the building of connective tissue and skin. Without the enzyme, cellular waste accumulates in the body, mostly in the brain.
Extreme sleeplessness is common with Sanfilippo syndrome. Seizures, hyperactivity, intellectual disability, heart problems and vision loss are other latter-stage symptoms. Dementia and a loss of mobility precede death.
Because the disease is so uncommon, it is often misdiagnosed as autism, and there are not enough cases to make it worthwhile for pharmaceutical companies to fund research.
But organizations like Cure Sanfilippo, which raised over $1.5 million in 2017, are funding clinical trials focused on introducing a healthy gene into patients as well as an alternative (and very expensive) enzyme replacement therapy. Stem cell research is at a pre-clinical stage.
“A lot of these trials they’re treating only six kids,” Nate Smith said. “They do select, typically, kids that don’t have too many signs yet. Spencer has that going for him.”
Wells wrestling coach Scott Lewia was an assistant coach to his brother Mark when Nate Smith was on the team from 1996-2000. Smith was a two-time state runner-up and won more than 100 matches while earning class valedictorian honors in 2000.
Lewia became aware of the Smiths’ plight a few days before the 2017 Class B wrestling championships and told his team about Spencer Smith at the next practice.
“I told them, ‘I should be thinking about the state championship but all I can think about is this little boy,’ ” Lewia said.
Wells High School wrestlers Drew Peters, left, and Sean McCormack wear T-shirts supporting Spencer Smith.
On the night Wells won the state championship, the team drove to a fund-raising dance and met the Smiths, including Spencer’s grandparents, Charlene and Dale Smith, of Wells.
“It was very emotional, one of the highlights of the past year for us,” Nate Smith said. “My old coach and all these players stopped by and they don’t know who I am or who Spencer is, but they wanted to share their night with us.”
Close to a year later, Lewia still has to choke back tears when asked why Spencer’s diagnosis hit him so hard.
“I’ve been doing this a long time. These are like my boys,” said Lewia, 54, who began coaching at Wells while still in college. “And I wanted them to know that no matter how long it’s been, we’ll always have their back.”
At matches, the Wells wrestlers don special T-shirts. On the front are the words “My Pal Spencer” above a photo of Spencer’s smiling face.
“A lot of people are like, ‘Oh, what’s that?’ And we get to tell them about it,” said Ryan Norton, a senior who competes in the 120- and 113-pound weight classes. “It’s a good feeling to be part of the team and to bring awareness to a subject like this.”
The wrestling team’s efforts fall within the Maine Principals’ Association’s guidelines for fund-raising. Tying financial pledges based on team or individual performance is common, said assistant executive director Michael Bisson.
Most of the individual pledges for the Wells wrestlers are between $1 and $3 per victory and 90 percent of the sponsors are friends, family, school district personnel and community members, Lewia said. The wrestlers are still actively seeking additional sponsors for this season, and Lewia said the team will continue to support the cause in future years.
WINS WITH A CHARITABLE BENEFIT
What can one wrestler realistically earn for the Sanfilippo foundation? Norton is a good example. Like most on the team, he wins more matches than he loses. He placed third in Class B as a junior. He currently is earning $10.75 per win (about average for the team, Lewia said) and has a 16-6 record. If Norton matches last season’s postseason success and keeps winning at his current rate, he’ll end up with about 37 victories worth nearly $400 for the Cure Sanfilippo Foundation.
“I really do think we will meet the ($2,500) goal. We have a lot of great sponsors,” Norton said.
Peters is inspired by knowing that personal success has a charitable benefit.
“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.”
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