Riley Duquette is a 5-year-old boy who likes techno music and when his mom, Karly, plays the piano, and goes to school at Mill Brook Elementary.
But when Riley was diagnosed with Peroxisomal Biogenesis Disorder at about 6 months old, the prognosis was not good.
“He’s already outlived his life expectancy,” Karly said.
His condition is extremely rare – only 1 in 55,000 children are diagnosed. It has left him with poor eye sight, deaf in both ears (but thanks to hearing aids he can enjoy his music) and he is essentially non-verbal outside of saying “momma.”
“That’s very unheard of for a child with this disorder,” Karly said.
He needs bone infusions every four months, and he’s currently the only child residing in New Hampshire affected by Peroxisomal Biogenesis Disorder, Karly said.
There are many spectrums, and Riley happens to land on the Zellweger Syndrome spectrum – which is unfortunately the most severe.
But even with all of his struggles, Riley is a happy little guy, even if he needs his family and school aides to help with simple tasks, like sitting up on his own.
“He relies on us 100 percent for many things,” Karly said. “Assistive equipment is Riley’s friend.”
And in an effort to get the word out about Peroxisomal Biogenesis Disorder and the Global Foundation for Peroxisoal Disorders, his parents, Karly and stepdad Shawn Moseley, organized Running for Riley.
“They are family to me,” Karly said of the foundation. “They called within two days of Riley’s diagnosis and the first thing they said is, ‘You’re not alone.’ ”
Its a fundraiser for the foundation, which has done so much to help the family over the past five-plus years.
“I don’t know how I would have gotten through those early days without them,” Karly said. “And any little bit of money helps with research and support.”
It’s all happening at White Park, where Moseley runs with his middle school cross-country teams and the family likes to spend time.
“White Park is a special place for our family,” Moseley said.
There will be four different start times.
Registration and check-in begins at 10 a.m. followed by a boys and girls youth division race (1-mile loop) at 10:30. The walking group will begin the same 1-mile loop at 10:45.
At 11:45 a.m., the boys and girls middle school and high school division embarks on a 2-mile run, and it’s all capped off with the men and women open division (2-mile loop) at 1 p.m.
Cost is $14 for youths and $16 for everyone else.
Online registration is closed, but you can sign up on race day.
Event T-shirts will also be for sale on race day for $10.
There will be music and a few other children who have been diagnosed with Peroxisomal Biogenesis Disorders in attendance.
For more info, visit gorileygo.wordpress.com or email Moseley at smoseley@sau8.org.
For more on the foundation, visit thegfpd.org.
