The Harrisons gave up skiing six years ago when their only daughter, Madison, couldn’t do it on her own.
The Barberton girl, now 11, had grown too tall to slide safely down the hill between her mother’s legs.
And the child fell — a lot.
That’s something any parent of a child with cerebral palsy comes to expect, said Jenessa Harrison, the girl’s mother.
Then again, there’s no time for the fun things in life, like skiing. The neurological disorder — the most common mobility issue among children — often requires surgery, which can take time for recovery. Treatment includes laborious therapy to keep muscles moving the way they should.
In June, Madison had abnormal nerves removed around the base of her spine. Without them, she’s gained flexibility. But the surgery left her weak.
On Sunday, she stood at the base of the longest hill at Brandywine Ski Resort, steadying herself against a walker with skis for bottoms.
“I did it when I was 5,” she said, adjusting her goggles and filing onto the ski lift.
“Cerebral palsy is a roller coaster ride. That’s what we call it,” said Jenessa Harrison, who knows her daughter Madison will never be able to ski like most children.
At least today, Harrison added, the roller coaster is going downhill.
Downhill hope
Akron Children’s Hospital has teamed up for the second year with 3 Trackers of Ohio, a local nonprofit, to give children with cerebral palsy the opportunity to experience something many were told would never be possible.
More than a dozen volunteer ski instructors from 3 Trackers led Madison and six other Akron Children’s patients down the slopes Sunday. The winter event is part of a larger effort as 3 Trackers has given amputee veterans, spina bifida patients and other adults and children with disabilities the chance to kayak, cycle and ski around life’s limitations.
Most of the volunteers on Sunday were avid skiers. Some work in the medical field. Most don’t. All are unpaid.
Some, like Jason Chonko, 40, are just professionals who want to make a difference. The engineer from North Ridgeville followed behind Madison, gently tugging on one of two straps to make a course correction. On the bunny hill, Chonko shouted “pizza” or “French fries” to let Madison know when and how to slow down or speed up while Mom and Dad took videos.
Mark Dietz, president of 3 Trackers, said the group has been connecting parents with certified trainers and rare manufacturers of adaptive sporting equipment for more than 40 years.
Participants pay modest fees for each event ($40 to ski or $20 to kayak) and a $15 annual membership. Donations comprise the remainder of Dietz’s $10,000 annual budget (60 percent pays for liability insurance).
With about 45 regular participants this year, Akron Children’s came on board last year after hiring Dr. Raffi Najarian, a pediatric physiatrist (physical medicine and rehabilitation doctor) who, like his patients, lives with cerebral palsy.
Najarian trekked through the snow Sunday in Chuck Taylor shoes leaning on canes, laughing with his patients.
The doctor grew up near Detroit and, like most children with cerebral palsy, was diagnosed shortly after birth. “You expect your child to sit up at six months. And parents see that their child is not doing that,” Najarian said of the brain disorder, which can develop at or before birth, or in the first year of development.
Muscular impairment does not worsen over time. There is no cure. Botox, therapy and surgery can help manage the effects.
“I experienced a lot of that as a patient before I even entered medicine,” Najarian said of the metal leg braces, therapy and surgery he endured in his youth. “I don’t think there’s anything else in medicine I would rather do.”
Najarian, 36, began skiing a decade ago. A few years later, he noticed while working at a hospital in Minnesota that adaptive ski equipment was being used to help dozens of children. It didn’t take long after being hired at Akron Children’s Hospital 2½ years ago to seek out Dietz and get the local program rolling.
Speaking from personal experience, Najarian said the program has great impact for children who are likely to face ridicule and adversity because of their physical disorder.
“We know that kids with disabilities aren’t always able to participate. That participation is important, we think, to their social and emotional development,” he said.
Blessing on skis
Tucked inside a sled with an animal print ski-mask whipping in the wind, Alexis Krosky came to another slicing stop at the bottom of “Outer Limits,” the longest stretch of snow at Brandywine.
“How many times have you gone down?” asked Brittany Parise, an Akron Children’s nurse there for moral support.
“Three times,” the girl said. Faster every time, she added.
Krosky, 17, has had more surgeries than birthdays. Her family, from Columbiana, has grown accustomed to driving from the Youngstown area to Akron for treatment. Sunday’s 90-minute drive was a treat, though.
“She said she’s on top of the world up there. She said she’s going to reach for heaven,” said Rachel Krosky, Alexis’ mom.
Mom remembered how afraid she was last year when Alexis went down the hill for the first time. It’s that kind of fear that families must overcome to not let limitations control lives, Najarian said.
Rachel Krosky praised the program for the joy it has brought her daughter, even though she has come to accept that the girl will never ski on her own.
“That’s never going to happen. Her legs don’t do what she wants them to,” Mom said. “But to see her go down that hill is a blessing because it’s something that was never supposed to happen.”
Doug Livingston can be reached at 330-996-3792 or dlivingston@thebeaconjournal.com.