Heroic Effort
Kristofer Robinson's newest prosthetic leg helps him walk, run and kick a ball. It rotates 360 degrees at the knee to help him get dressed and sit cross-legged.
His family calls it “Leonardo” after the Teenage Mutant Ninja Turtle graphics inlaid in the hip and on the leg.
It's a far cry from the first leg the 9-year-old was fitted with in 2009. His first prosthetic was large, clunky and came up to his chest, making it difficult to even go to the bathroom on his own.
The Robinson family of Jefferson Township is the 2017 beneficiary of Once Upon A Hero, a Cranberry Township-based nonprofit that raises funds for families in need. The group will help with costs related to Kristofer's new prosthetic.
Kristofer had his right leg removed from the hip down when he was nearly 2 years old. An aggressive and rare form of cancer, mesenchymal chondrosarcoma, was discovered in his pelvis and had taken over his hip and the top of his femur, said Rachel Robinson, his mother.
After the surgery, Kristofer went through several rounds of chemotherapy and physical therapy. In July 2010 his treatment was complete and he was cancer free, Rachel Robinson said.
Although he could get around well by hopping and using a walker, Rachel Robinson knew it would be important as he got older to have a prosthetic leg that worked for her son.
She began researching companies and found A Step Ahead, a New York-based company that makes advanced prosthetic limbs.
In June 2015, the family traveled up to New York for five days to get Kristofer's new leg built and fitted to him.
“He loved to wear his leg,” Robinson said. “He felt just like a regular boy.”
The prosthetic was covered by insurance, but Kristofer needs to visit A Step Ahead three or four times a year to get the leg adjusted as he grows. He was fitted with another larger leg by A Step Ahead in May to fit his growing body, and he will continue to get adjustments throughout the year.
A Step Ahead had donors to cover travel costs for the adjustment trips for a while, but now the Robinsons must pay for their travel expenses. The plane tickets to New York cost about $2,000 each time for Rachel and Kristofer, his mother said.
That's where Once Upon A Hero came in. Rachel Robinson saw a story in the spring in the Butler Eagle about the organization and applied to be a beneficiary. Money raised by the organization will go to help with travel costs for the Robinsons, consisting of Rachel, father Keith and younger sisters Elyzabith and Madelyn.Once Upon A Hero is hosting a golf outing at 2 p.m. Saturday at Stonecrest Golf Course in Wampum and a Halloween Party at 6 p.m. Oct. 21 at the Mars VFW to raise funds for the Robinsons. More information on both events can be found at www.onceuponahero.org/events.html.Dawn Hack started Once Upon A Hero in 2013 after her father died as a way to channel her grief into something positive. Donald Spillane died trying to rescue a girl who had fallen off a cliff at McConnells Mill State Park.“It started out as something I thought my dad would be proud of and while it still is that, it has grown,” Hack said. “It's more so about being there and making a difference for people who need someone to care.”Rachel Robinson said being selected by the group lifted a huge burden off their shoulders as they continue to give Kristofer, who will enter the fourth grade at St. Luke Lutheran School this fall, as normal as life as possible. He also plays hockey with the Mighty Penguins Sled Hockey team.“The biggest thing we did was we didn't allow him to take the cop-out,” Rachel Robinson said. “We've always tried to push him to have him be like everyone else …. It makes me proud to see how far he's come.”
