BUFFALO, N.Y. — The 62nd annual Variety Telethon starts Saturday, March 9, on Channel 2 and every year the Variety Club picks one child to be the face of the telethon.
This year's Celebrity Child is Oliver Cope. He's 7-years-old, a second grader in Blasdell and lives with his mom Amanda, dad Eric and 10-year-old sister Frankie.
Ollie, as he's affectionately known, is not shy and loves Legos, Ninja Turtles, and Sonic the Hedgehog. In so many ways, Ollie is just like other 7-year-olds, but Ollie has also experienced more medical hardships than any of us could ever imagine in a lifetime.
"It was our 20 week ultrasound that we found out that his left femur was either bent or broken," said Ollie's mom, Amanda. "At first it was just is left femur, and then it was both femurs, and then both shins and they were confused as to why it was just his legs. As soon as he was born it was obvious he had OI."
Osteogenesis Imperfecta is an extremely rare genetic disorder also known as brittle bone disease.
"I have soft bones. My bones are like glass," said Ollie.
Ollie was born with 8 broken bones and that was just day one. From there, things most parents take for granted - bath time, changing diapers, getting dressed- became dangerous and delicate tasks.
"There was one day dad was holding you and all he did was shift his over to his side and his femur broke and it sounded like a pencil snapping," Amanda said to Ollie.
Now they estimate he's had almost 100 broken bones, but truly they've stopped counting.
"I couldn't even tell you the exact number we're at. Sometimes it's obvious there's a break. And other times you can tell something hurt or he tries to hide it sometimes," she said.
Surgeries, infusions, and physical therapy are all they can do to control the breaks. And that's where the Variety Club steps in.
Ollie is happy and strong and free inside the pool at the Oishei Children's Outpatient Aquatics Center, a place sponsored by Variety Club.
"He can be in the water and really feel his body take off and move in different ways that he doesn't get a chance to and do some walking. It also helps us to strengthen those muscles because we're doing it," said Jill Lelonek, a Physical Therapist at Oishei.
The Cope family's message to those who donate to Variety and the impact it makes on their life?
"I couldn't thank them enough because without water therapy and physical therapy his life would be different. There's only so many things we can do to control this for him. Without therapy he wouldn't be able to have the muscle strength that he does to help support his bones. It just helps him live."
It's been said that a child with OI has breakable bones, but an unbreakable spirit. That couldn't be more true of this year's Variety Kids Telethon Celebrity Child, Oliver Cope.
And what does it mean to family to have Ollie be this year's Celebrity Child for Variety?
"It's amazing. It's something we'll always remember," said Amanda.
To learn more about Oliver Cope, click here.
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