Skateboarding the latest accomplishment for Westerville boy with rare genetic disorder – The Columbus Dispatch

Posted: October 20, 2020 at 7:55 pm

Ken Gordon|The Columbus Dispatch

Watching his son Sora crouched low on a skateboard recently, gliding smoothly down a ramp at Adventure Park in Powell, Tristan Chamberlain thought of all the things that doctors had said Sora would never do.

Born in 2015 with Prader-Willi Syndrome, a rare genetic disorder, the outlook for Sora was uncertain. The syndrome affects about 1 in 15,000 children andtypically leaves themwith low muscle tone, abnormal growthand intellectual disabilities, among other issues.

They told us there was a good chance he would have to use a walker for the rest of his life, Chamberlain said. At 3, he was walking on his own. Then they said, `Well, hes walking now, but he wont be able to run and play like normal kids can do.

So then we got him running around, and they said he probably wont be able to do other things like jumping.

He pulled out his phone and showed off a picture of Sora, now 5,jumping off a large climbing rock at a different park.

A skateboarder in his youth he calls Sora"little dude" and uses the term "gnarly" often Chamberlain, 39, introduced Sora to the sport as a way to keep up his son's muscle tone and balance during the COVID-19 pandemic, when hisphysical therapy sessions were temporarily halted.

Chamberlain said skateboarding has helped Sora both physically and socially. And the skate community, he said, has been welcoming.

"His reaction time is a lot better, he can anticipate things," he said. "And the skills he has developed here have translated into other things, like his running is so much better now."

As for the doctors' gloomy predictions, he said he understands why doctors are hesitant to be overly optimistic, not wanting to provide false hope. But he along with his wife, Tomomi Tanaka never bought into the idea that Soras potential was limited, even after more obstacles were added to his path. He was diagnosed with cerebral palsy 18 months ago and also is on the autism spectrum.

Every new parent has this fantasy of what its going to be like to have a child, and sometimes life punches you in the face, TristanChamberlain said. But having a special-needs child has been the most rewarding thing in my entire lifebecause it taught me to quit worrying about things I cant control.

I cant change the fact that my son has a genetic disorder, but I can change myself and be the best dad possible.

For the Chamberlains, that has meant being aggressive advocates for Sora. That philosophy included approving a regimen of human growth hormone for their son, starting at 6 months of age.

The hormone, approved as a treatment for Prader-Willi in 2000, helps build muscle tone and possibly can help improve cognitive function, as well, according to Dr. Kathryn Obrynba, an endocrinologist at Nationwide Childrens Hospital and medical director of the hospitals Prader-Willi Syndrome Clinic.

Prader-Willi patients have a malfunctioning hypothalamus, the part of the brain that regulates essential functions such as hunger, body temperature and pain.

The natural course of this disease is changing every day because parents like Soras have advocated for change and been onboard with therapies like early growth hormone, Obrynba said. What may have been expected of patients 10 years ago is different from what we anticipate or expect now.

The Chamberlains have had Sora in physical therapy, occupational therapy and speech therapy for years. Not long after the physical therapy stopped this spring, Tristan Chamberlain was cleaning out the garage one day when Sora found his old skateboard.

He picked it up and said, `I want to ride it, Chamberlain said.And I thought, `Why the heck not?

The two started in April in the driveway of their Westerville home, learning to balance and stay on the board. By June, Chamberlain began taking Sora to a skatepark.

His wife, though, does not come and watch. Its a 'mom thing. Chamberlain's mother, Stephanie Chamberlain, said she can relate.

I remember the first time I watched Tristan drop in (to a steep ramp), I thought I was going to throw up, she said while watching her son and grandson at Adventure Park recently during a visit from her home in North Carolina.

All padded up and helmeted, Sora skates confidently, though on this day the park was crowded, and Chamberlainseveral times had to spring into action and guide Sora out of another skaters path. After seven runs, Sora got tired and a little cranky. It was time to head home, where he could play with his 3-year-old younger brother, Kai.

Chamberlainsaid Kai, a typically developing child, has been good for Sora, as has been his pre-kindergarten experience at the Westerville school districts Early Learning Center. The Chamberlains moved from German Village two years ago just so Sora could attend.

There, he and other special-needs kids are in a classroom with typical kids. The goal is to normalize special needs, and also perhaps for the typically developing kids to push Sora to try harder.

It is a phenomenal environment, Chamberlain said.

Obrynba said she wasnt aware that Sora wasskateboarding, but she isnt surprised.

Thats awesome, she said. Tristan and Tomomi support Sora amazingly. Im so impressed with what they do.

The Chamberlains also are involved in fundraising campaigns for Prader-Willi Syndrome. Tristan Chamberlain is particularly proud of aninitiative he and a friend are planning, a line of skateboards that will be sold to benefit research.

They are imprinted with a phrase that he says is inspired by the memories of being told what Sora would never do:

Yes, I Will.

kgordon@dispatch.com

@kgdispatch

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Skateboarding the latest accomplishment for Westerville boy with rare genetic disorder - The Columbus Dispatch

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