ELYRIA, Ohio (WJW) — State police from across several states came together Friday for a unique relay to help out a local little boy who suffers from an extremely rare condition.
“He used to be able to ride a bike, he used to be able to go and run,” said Terra Oliver, whose 6-year-old son Silas was diagnosed with the rare gene mutation KMT2B. “It’s a degenerative condition that affects your joints, and your muscles along with brain.”
Only about three dozen people in the United States have this debilitating condition.
Silas has already undergone 39 surgeries and most certainly will need more in the future. He has lost much of his large and small intestines, can no longer eat solid food and must use a catheter with drainage bags.
“I’m not gonna lie, it definitely is a lot, but he is the light of our house, he’s amazing, always has a smile on his face,” said Terra. “I can’t tell you one surgery that he was not happy afterwards.”
Terra and her husband Bobby, Silas’s dad, wanted to do something special for him and posted on Facebook that they were trying to find a special needs bike.
She says they never expected what happened next.
The post was forwarded to FOX 8 and we ran a story about it on August 12. That report was shared repeatedly and ended up being sent to Robert Charland in Springfield, MA.
Charland is a deputy sheriff who runs the non profit “Pedal Thru Life.”
“Someone sent me the news story,” said Charland. “I had two bikes in our shop that would work perfectly and I clicked on it thinking it would be simple then realized it was Ohio.”
Charland was himself diagnosed with a degenerative brain disease and he says getting bikes to special needs children has given his life renewed purpose.
“Oh it’s a fantastic feeling to know we’re enriching their lives and giving them something most people can’t give them,” said Charland. “Bikes aren’t covered by insurance and these bikes can come at a high cost.”
Charland was determined to make sure Silas got his bike and joined forces with the Massachusetts State Police. Officers loaded up the bike up Friday morning and drove to New York where they handed it off to their state troopers, who then drove it to Pennsylvania where state police transported it over to Ohio.
The Ohio State Highway Patrol then drove the bike to Elyria and hand delivered it along with a helmet to Silas and his family Friday night around 6:30 p.m.
While the troopers then helped Silas learn how to ride the new bicycle, his mom broke down in tears.
“It’s overwhelming, honestly, seeing him riding,” said Terra. “We’re very humbled by it, we’re so thankful.”
Silas seemed delighted by all of the attention and also said “thank you” to the troopers.
It was a very long journey, but troopers say they are the ones who feel grateful to have been part of such a special delivery.
“A lot of agencies got involved from start to finish,” said Sgt. Ray Santiago with OSHP. “It’s something that gives you a sense of restored hope.”
“Especially with everything going on, with the pandemic, just to make somebody happy and smile is all that matters,” added Lt. Alan Dunbar, OSHP Elyria Post Commander.
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