For Andrea Kojima, Christmas came Friday at Shriners Hospital for Children-Northern California where her kindergarten-age daughter Noemi picked up the shiny new wheels that Santa Claus had promised her in a note last December.
“My daughter asked for Christmas for a bike,” Kojima, 40, said. “It was her first time in preschool last year, and she noticed how all of her peers were riding ... trikes out at recess time and playground time. And it was an activity she just could not do.”
Not that Noemi had not tried.
She had hopped on old bikes and tricycles in the garage that her older siblings had outgrown, Kojima said, but the muscles in her legs and arms had never extended and flexed like her brother’s and sister’s had. Noemi’s condition has a name that is a mouthful — arthrogryposis multiplex congenita — and it’s why she met her limits when trying to pedal and steer the hand-me-down wheels.
This summer, though, the Shriners team introduced Noemi and 22 other young Shriners patients to bicycles and three-wheelers adapted with equipment that will let them experience the freedom and joy of pedaling alongside their families and friends.
“A lot of these kids don’t go to regular summer camps or even just go to the store and buy a bike. They can’t,” said Laura van Houtryve, physical therapist at Shriners. “So we provide bikes custom-made for them and then the social skills and the physical therapy aspect of it to learn how to use it, to ensure that they do use it.”
Don’t tell Noemi, but van Houtryve and others said a number of real-life Santas make the Shriners BikeFit program a success. Shriners staff work year round to identify children for the program, line up student volunteers from the physical therapy program at Sacramento State to devote individual attention to each child, and find donors to fund the bicycles.
A nonprofit organization called AMBUCS gives away some of the adaptive trikes they manufacture and sell to the public and to rehabilitation units. Members of the AMBUCS chapter in Reno drove over weekly to help customize the trikes to the needs of the 23 kids in Shriners’ BikeFit program.
Local police officers volunteered to help teach the kids rules of the road in one of their seven 90-minute classes, but the officers returned to successive classes just to have fun with the students. Noemi said one of her favorite memories was when the officers came and brought stickers.
The Shriners staff sneak in lessons and fitness challenges through recreation, said Erin Cloughesy, an activities coordinator at Shriners.
“The week that really sticks out to me was our obstacle course week because it was for endurance, a fun way for them to learn endurance,” Cloughesy said. “You can’t get off your bike. You have to keep going. Our coaches and our volunteers did such a wonderful job of coaching the kids, and the kids didn’t realize they were pushing through these obstacle courses because it was fun.”
This year’s BikeFit class included children who had weak legs because of spinal cord defects, a child who had a brittle bone disease, a boy who had no use of his legs and required hand pedals, and a number of students with joint issues. Some families drove as many as 200 miles weekly to participate.
“This year, we have levels from almost independent walkers all the way up to full-time wheelchair users, and they’re all out there together, riding their bikes,” van Houtryve said. “It gets their muscles going. It’s good for their heart and cardiovascular and pulmonary. It helps them with breathing better. They get little rosy red cheeks. It’s a really good opportunity for these kids to get really good exercises that they wouldn’t normally get.”
There are many bike variations, she added: Some have higher back rests. Some have straps to keep the child’s feet in place. All have seat belts.
The physical therapy students from Sacramento State train in how to assist the children, van Houtryve said, and then teach them how to get on and off the bikes, how to socialize, and many other skills.
Volunteer Sarah Curd said she burned a lot of calories chasing Noemi’s bicycle – and learned she could work with kids.
“She might be huffing and puffing when she gets off that bike, but in the end, she had a great workout and it was fun physical therapy, and she learned a new skill and we all had fun,” Curd said.
Dr. Maya Evans, a pediatric physiatrist, has worked on the BikeFit program since Shriners started it four years ago.
“It really helps me have something to give the children that is tangible, that is something to take back to their community, a sense of empowerment, a sense of self-efficacy that they can do so much more,” Evans said. “ I had a patient who did BikeFit one year, and then he tried out for regular Little League the next year. It really helped him take that step of getting out there and participating in a way that he was fearful of before. It gave him that sense of ‘I can do whatever I set my mind to,’ and I think that’s really powerful for kids who face extra challenges.”
Kojima recalled the day she got the call that Noemi had been moved from the waiting list and enrolled into the BikeFit program. She was driving.
“I cried. I started crying,” she said. “I had to pull over because I started crying. I thought, ‘Oh, my gosh, she’s going to get a bike. ... She has a power chair, so she follows them (her brother and sister) in the power chair, but every night, she’s been saying, ‘When BikeFit’s over, I’m going to come home and ride my bike with them.’”