“I got a bike!”: Adaptive bike brings freedom to boy with cerebral palsy

hunter and bikeSeven-year-old Hunter Ripley is a boy of few words. There’s a rare “bye-bye” to his mother as he sets off for school and an occasional “whee” when he’s pushed on his adaptive swing.  So when Hunter screamed, “I got a bike!” at the local pool where he does aquatic therapy every Thursday evening, everyone in the pool went silent. “Then the cheering started,” recalls his mother Bekah Ripley.

In February, Bekah and her husband Bart learned about The Great Bike Giveaway, a national contest in which children with special needs can win their own adaptive bike. In order to win, Hunter needed votes and lots of them. Within 48 hours of entering the contest, Hunter had 500 votes—not enough to win, but enough for Bekah to believe that it was possible. So she pulled out all the stops. The Ripleys reached out to families and friends across the U.S., and Hunter’s respite worker called local news stations in Albany, N.Y., to ask them about posting Hunter’s story on Facebook. And when the ABC affiliate aired an interview with the family, Hunter skyrocketed from 16th to first place. He won the contest by nearly 7,500 votes.

“I never thought he’d win. It’s mind-boggling,” says Bekah.

But it’s not the first time Hunter has overcome the odds.

After Hunter was born, doctors told his parents he probably wouldn’t live through the night. Bekah had suffered a maternal-fetal hemorrhage, and Hunter’s umbilical cord had wrapped around his neck. His brain was severely injured.

But he made it through the night and went home with his parents after only 13 days in the neonatal intensive care unit (NICU).

Bekah and Bart were thrilled, but Hunter’s rough start had left permanent damage. In the NICU, he was regularly monitored by an electroencephalogram (EEG), which showed that he was having seizures that weren’t visible to his parents or doctors. He was prescribed phenobarbital, which left him sleepy and lethargic, to control the seizures. Doctors weaned him from the drug around four months of age, but the seizures returned and he regressed—he stopped smiling and no longer ate from a spoon.

Hunter went back on the medication. His doctors followed him closely, and Bekah kept a routine that included speech therapy, occupational therapy and physical therapy. Shortly after his first birthday, he was diagnosed with cerebral palsy with multiple disabilities. Hunter has muscle-coordination issues, primarily tight muscles and spastic hip dysplasia; both are common among children with cerebral palsy. He also is non-verbal and has vision problems.

The Ripley family persevered through Hunter’s challenges. He learned to feed himself, and when his younger brothers Garrett and Brock arrived, he HUnter2 croploved playing with them. And Bekah continued to lobby for her son, believing in his capabilities.

As a toddler, Hunter’s routine included regular appointments with local specialists. “Friends and family suggested we take Hunter to Boston Children’s Hospital, but I thought, ‘He’s getting his medications and has the ongoing care he needs. What else are they going to do in Boston?’” Bekah resisted.

But when his local doctor couldn’t help get Hunter into research studies, Bekah turned to Google. She found Boston Children’s Orthopedic Center and the Brain Center and scheduled appointments for Hunter, then 4, with Benjamin Shore, MD, orthopedic surgeon, Susan Quinn, MD, physiatrist, and David Coulter, MD, neurologist.

Bekah was nervous about the day-long visit for Hunter’s three appointments. “What was I going to do with my other son, who was 2 at the time? Luckily for us, he stayed busy with the playground, fish tank and xylophone steps.”

And Bekah found Hunter’s new team brought a fresh outlook. “They didn’t give us false hope, but it wasn’t like there was no hope. Dr. Shore ran through the gamut of possible ways Hunter would develop through life. He answered every question on our long list and never rushed us.”

Shore also shared information about support groups that could help the family, and Coulter directed the family to summer programs that could help Hunter through the transition to kindergarten and first grade.

Hunter5 cropMore than two years later, the Ripleys make the trip from the Albany area to Boston two to three times a year. Coulter monitors Hunter’s seizures; the goal is to lessen the medication dose needed to control his seizures.

Shore keeps close tabs on Hunter’s hip dysplasia. “Hip instability tends to be progressive in kids with cerebral palsy. As their muscle tone increases, the hips start to slide out of the hip socket, which is why we monitor them with regular x-rays,” explains Shore. Every six to nine months, Quinn injects botulinum toxin and phenol, which help release the tension in the rigid muscles in his legs, making it easier for Hunter to bear weight and walk with the assistance of his gait trainer. However, Hunter’s dysplasia is fairly severe and has continued to worsen despite physical therapy, bracing and injections, so the next step, scheduled for August, is surgery to reconstruct the ball-and-socket hip joint.

Meanwhile, Hunter is eagerly waiting for his adaptive bike. “The bike is going to be great for Hunter,” predicts Shore. “It will exponentially expand his mobility and introduce a new form of play to his life.”

Learn more about Boston Children’s Cerebral Palsy Family Resources.

Hunter receives his bike. Watch the video.