Brooke Marafino will take to her pink, 21-speed Schwinn later this month and set out on her fifth Ride for Roswell.
It will be the latest turn this 17-year-old from Cheektowaga has taken in an improbable life that doctors and teachers predicted would end up far differently than the road laid out for her now.
She is not a child cancer survivor, but knows the challenges of living an atypical life.
Brooke was born three months prematurely, at 1½ pounds. Her parents were told she would never ride a bike, would struggle through school and never go to college.
“They had to take her to save me,” said her mother, Karen Marafino. “She was born in July and didn’t get to meet her cousins until Christmas.”
The premature delivery led to a series of complications that taxed Brooke’s coordination and spawned other learning and physical challenges – including the ability to ride a bike.
“Staying up on the bike was the hardest part,” she said. “When I was younger, I didn’t have very good balance and I still don’t to this day. I fall up and down stairs at school, and even at home. I bump into walls. Very uncoordinated.”
“But you ride like a champ now,” her mother beamed.
As they shared their story, a box of Kleenex came out onto the livingroom coffee table. The father, Scott, was out helping with a school athletic event; younger sister, Megan, 15, was downstairs in the family’s home off Walden Avenue, studying with a friend.
Mother and daughter want other families with children who have Down syndrome, autism or other special needs – who may have been told those kids might never ride a bike – know that there happens to be a camp starting at the end of this month that might well change that outlook.
The $175 cost may be one of the best investments a family will make for such a child, said Karen Marafino, who works for Univera Healthcare, which helps underwrite some of the camp costs, and now counts herself among the volunteers who helps bring it off each summer.
She found out about the iCan Bike Camp online through the Down Syndrome Parents Group of Western New York in 2010, shortly before Brooke’s 13th birthday.
“It’s such an emotional story for me because it changed everything,” Karen Marafino said. “I was always told, She won’t be able to do that, don’t push her. Just accept whatever she wants to do. That’ll be good enough.
“Having her learn to ride and watching her realize that she can do anything was incredible. Sometimes it might be a different way that she learns or it might take her a little longer, but it doesn’t mean she can’t do it. It’s really cool. I’m so proud of her.”
This year’s camp will start June 29 – two days after the Ride for Roswell – and run through July 3 at Clarence High School. To register a child at least age 8, visit icanshine.org or call 817-7204.
The goal of the camp is “to teach individuals with disabilities to ride a conventional two-wheel bicycle and become lifelong independent riders. This achievement, in turn, creates a gateway of opportunity, helping them gain assurance and self-reliance in many other aspects of their lives,” according to iCan Shine, a national nonprofit that devised it.
Brooke’s road to the camp was arduous. She watched her younger sister learn to bike long before she could do so herself. By the time the camp rolled around, she’d tried and tried, but failed – despite the best efforts of her parents to help.
“We worked with her physical therapist and her occupational therapist and we couldn’t teach her,” her mother said. “She would cry every day because we’d take her outside and try to teach her to ride a bike but she would fall. She’d say, ‘I don’t want to do this because the neighbor can see me.’
“It was humiliating for her. She was really upset and we didn’t know what to do.”
By this point, grade school teachers had already told Brooke’s parents that their daughter would probably get through high school but never get a Regents diploma.
“During Individual Educational Plan meetings, every year we’d go in and they’d say, “I wish I had a whole class full of Brookes,” her mother said.
College? Out of the question, the teachers said.
But something happened at that bike camp. Instructors from iCan Shine were invited by the Down Syndrome Parents Group of Western New York to teach a camp in the region. Brooke attended the second annual camp.
A paid specialized floor supervisor and bike technician come into town and started the camp with adapted bikes, Karen Marafino explained.
“The rear wheel is taken off and they put on something that looks like a rolling pin that’s real wide and round,” she said. “The kids ride around in the gym on these specially adapted bikes and they learn how to balance. The instructors don’t tell the kids, but as they’re riding, they start swapping out the rollers that are more and more tapered, so the kids are learning how to balance but they don’t know it.
“Two to three volunteers work directly with each child every day. They’re there for 75 minutes. Finally, the kids transition to a bike and there’s a handle on the back of the bike seat. They don’t hold the handle. The handle is there in case the person starts to fall. You don’t want the bike to fall on the child.”
Near the end of the camp, students are asked to bring in their own bikes from home. Roughly 85 percent of those who start the camp can ride a bike by the time it’s completed, Marafino said.
She credited the skill of the instructors and dynamic of the camp for her daughter’s success.
“There were other kids there who couldn’t ride,” she said, “whereas at home Brooke was the only one. There were seven other kids in her session who were in the same boat. She would never let me watch her. She kept kicking me out. I kept sneaking in and taking pictures, though.
“On the first day of camp, she had a big smile on her face and every day she’d get more and more upset. On the last day, she was sobbing. And we asked, ‘What is going on?’ And she said, ‘I never thought I could do it, and I learned I could do it.’
“It was huge, a huge thing for her. We never thought about how it would change how she felt about herself, or anything since the camp. We just wanted her to learn to ride. That was our whole goal. But what happened afterward was just amazing.”
“It really boosted up my confidence,” Brooke said. “It helped me see things in a different perspective. Before, I was just so down. I was telling myself, ‘I’m not going to be able to do any of the stuff I want to do. I’m not going to be able to learn as fast as any of the other kids in my school.’ Ever since I learned how to ride a bike, I went from ‘I can’t do something’ to ‘I can do it!’”
That includes the Ride for Roswell.
Brooke learned nearly a year after she learned to ride a bike that a family friend’s daughter had been diagnosed with bone cancer.
“She wanted to use what she learned to help other people,” her mother said. “She’s pretty cool.”
The Marafino family, which will make its fifth ride on June 27, has raised more than $5,000 during the ride as part of Team Cyclone, which has raised about $50,000 for Roswell Park Cancer Institute during the same time span, Karen Marafino said.
Karen and Brooke will go on the 10-mile trip this year; Scott and Megan will log 30 miles.
When the weather is good, Brooke rides her bike around the neighborhood three or four times a week.
She’s also come a long way academically.
Brooke is about to finish her junior year at Cheektowaga High School. She is in typical classes but gets extra support with some of them, but has passed required Regents exams on her own.
“She’s passing ‘em, doing better than some of the typical kids in her classes,” her mother said. “She passed global the first time.”
Brooke expects to graduate with a Regents diploma next spring. She took Spanish 4 this year, and earned college credit.
Megan and Brooke were each inducted into the Cheektowaga High School National Honor Society this spring, as well.
Parents of all the children so honored spoke about their children by microphone from the back of the auditorium.
Karen asked her husband to talk about Megan; she was sure she’d never get through a talk about Brooke without audible sobs.
According to Karen, her husband said of Brooke: “She is the hardest working, most dedicated person that we know, and she’s so kind and so generous. We’re very proud of her.”
Brooke attends the Erie 1 BOCES Harkeness Career and Technical Center culinary program, as well as her other high school classes. She looks to take culinary classes a little over a year from now at Erie Community College, and visited the school’s open house in late April.
“When I was a little girl I would come home every day and turn on the Food Network, Channel 50,” she said. “All the cooks gave me so much inspiration. As of right now, I plan to work in a restaurant.”
Meanwhile, the family looks to enjoy part of the summer biking on the Buffalo waterfront.
Karen Marafino has a new trailer hitch on her Ford Escape, and a bike rack that can hold four bikes.
“We’ve learned to really appreciate each other,” she said of her family. “What you imagined the way things were going to be, they may not work out the way you thought, but it’s the way they were supposed to be.”