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Program offers adaptive bikes to children with disabilities

| Saturday, June 20, 2015, 4:14 p.m.
Luca Cusimano, 5, of Indiana takes a spin on his new bike at the Indiana County YMCA.
Bruce Siskawicz | Trib Total Media
Luca Cusimano, 5, of Indiana takes a spin on his new bike at the Indiana County YMCA.
Luca Cusimano (front), 5, of Indiana takes a spin on his new adaptive bike with the help of his father, Chris, and twin brother, Nico. Luca received the bike through the My Bike program of Variety the Children’s Charity during a June 10 presentation at the Indiana County YMCA.
Bruce Siskawicz | Trib Total Media
Luca Cusimano (front), 5, of Indiana takes a spin on his new adaptive bike with the help of his father, Chris, and twin brother, Nico. Luca received the bike through the My Bike program of Variety the Children’s Charity during a June 10 presentation at the Indiana County YMCA.
Variety the Children’s Charity gave away these adaptive bikes June 10 in Indiana.
Bruce Siskawicz | Trib Total Media
Variety the Children’s Charity gave away these adaptive bikes June 10 in Indiana.
Jeff Rukas of Blackburn’s, a medical equipment company in Tarentum, explains some of the features of the adaptive bikes given away June 10 at the Indiana County YMCA.
Bruce Siskawicz | Trib Total Media
Jeff Rukas of Blackburn’s, a medical equipment company in Tarentum, explains some of the features of the adaptive bikes given away June 10 at the Indiana County YMCA.
Variety the Children's Charity bike giveaway at the Indiana Co. YMCA June 10.
Luca Cusimano, 5, of Indiana takes a spin on his new bike with the help of his twin brother Nico.
Bruce Siskawicz | Trib Total Media
Variety the Children's Charity bike giveaway at the Indiana Co. YMCA June 10. Luca Cusimano, 5, of Indiana takes a spin on his new bike with the help of his twin brother Nico.

Variety the Children's Charity has an unusual problem. The Pittsburgh-based nonprofit has obtained sufficient sponsorships to purchase 200 adaptive bikes for children with disabilities, but it's come up short in its search for kids to receive them through its My Bike program.

“We just need to find the kids,” said Charlie LaVallee, Variety CEO. “We know in Indiana County there are around 380 eligible kids, so we just need to get the word out. Let's find those kids. Let's get them on their bikes.”

Luca Cusimano, 5, of Indiana became the proud new owner of an adaptive bike at a My Bike presentation June 10 at the Indiana County YMCA.

The son of Chris and Wendy Cusimano and twin brother of Nico, Luca has mild cerebral palsy and suffered a loss of hearing, though he has regained hearing through two cochlear implants.

“This is great,” Chris Cusimano said of the new bicycle. “It's hard to find specialized equipment. This will really be able to help him participate. It's fantastic.”

“He's going to love it,” said Diane Gray of Hastings, Luca's aide through Bayada Pediatrics in Blairsville. “He can ride bikes with his brother now.”

At the local event, Variety partnered with Indiana Regional Medical Center and American Federation of State, County and Municipal Employees Council 83 to present adaptive bicycles to Luca and to six children with disabilities from other counties.

Beginning My Bike in November 2012, Variety gave away 700 bikes in the first two years of the program and more than 100 in the third year while collecting funding for 200 more. The bikes are given on a first-come, first-served basis throughout the 32 counties Variety serves in Western Pennsylvania and West Virginia. Sponsored bikes may be designated for a specific county.

It costs $1,800 to sponsor one of these custom-fit cruisers. Each features Velcro straps on the pedals and a stationary brake that must be engaged every time the child gets on or off the bike. Bikes can be adapted with various steering and pedaling options; some come equipped with a bar that allows a parent following behind to steer and brake the bike as needed.

All bike recipients also receive a stationary stand on which the bike can be placed for year-round indoor use.

According to the Institute for Evaluation Science in Community Health at the University of Pittsburgh's Graduate School of Public Health, there are 10,000 children in Variety's service area who have autism, cerebral palsy and Down syndrome ­— the top three diagnoses among children who have received the adaptive bikes. That number includes 379 children in Indiana County.

In 15 of the 22 Western Pennsylvania counties that Variety serves there are 10,000 eligible kids, who must be between the ages of 4 and 21. “So obviously, we're not getting the word out,” LaVallee said.

He said many middle- and working-class families would be mistaken in thinking they wouldn't be eligible for a bike because of their income.

Guidelines require an income below $63,720 for a two-member household, $80,360 for three members, $97,000 for four, $113,640 for five, $130,280 for six, $146,920 for seven and $163,560 for eight.

At the June 10 event, the local AFSCME council donated $2,000 to Variety and third-graders at the Purchase Line School District were recognized for raising $528 for the charity when they “passed the hat” at a school musical event. Four children in the school district have received adaptive bikes.

“The bikes have shown us that the community will commit to the kids,” said LaVallee, noting Variety has given away an estimated 1,000 bikes, representing $2 million in donations.

LaVallee discussed two related programs — My Stroller and My Voice — that Variety introduced last year based on feedback from parents.

Some caretakers of disabled children might not be able to load a wheelchair into their vehicles. Variety provides eligible applicants with more compact strollers that are easier to stow.

“Not everyone has a pickup truck or an SUV,” LaVallee pointed out.

My Voice gives communication devices to children unable to use their own voices.

“We have a lot of kids who do not have a voice,” LaVallee said. “They are unable to communicate in words. But shouldn't every child be able to talk about something as basic as what they'd like to eat, or to say something that every parents wants to hear — ‘I love you?'”

The communication device is essentially an iPad loaded with helpful apps. One has icons the child can select to let a parent or caretaker know about immediate needs — for instance, if the child is hungry or needs a bathroom break.

A camera app can be used to take pictures of a child's wardrobe and allow the child to help choose outfits to wear.

Variety will have provided 50 communication devices by mid-July, according to LaVallee.

Wendy Cusimano noted the My Bike program gave her son the freedom and independence to enjoy having a bike of his own, something that previously had been nearly impossible.

“When I saw they have a bike that would be customized for Luca, with the safety harness, pedals strapped in, measured to fit him — you can't imagine the feeling to see him get measured and test drive bikes,” at an appointment the family made in Altoona, she said. “It was amazing.”

Luca, a premature twin, has undergone special instruction and physical and occupational therapy from birth.

According to his mother, several of the boy's therapists had recommended him for assistance through the Make-A-Wish program, but it was discovered he was no longer eligible due to policy changes. Then, through friends, the Cusimanos learned about My Bike and that members of Indiana's American Legion post had seen a presentation about the program.

“The day after I went online to put in the application, the Legion approached us to see if we wanted to go get a bike through them,” she said.

With the eventual goal of walking independently, Luca undergoes physical therapy both through a private provider and through school. His therapy includes riding a bike.

“We've gone through so many bikes — Big Wheels, a tricycle, a Schwinn Lowrider,” Cusimano said. “We've tried adapting bikes to make them easier for Luca to use, switching out pedals, adding Velcro. Nothing seemed to work.”

Frustrations were growing as Nico learned to ride a bike. Cusimano said Luca would often try to get on his brother's bike to no avail, and would have to ride in a bike trailer or on a seat attached to one of his parents' bikes.

“Now he can be totally independent,” she said of Luca. “He is excited he won't have to ride with Mom anymore.”

A nice feature of the new bike is that it can be adjusted as Luca grows, and he'll likely be able to keep riding it for the next three to five years. When he eventually does grow out of it, she said, the family will be able to apply for another bike.

“We try to have him strive to be as normal as possible, and with his twin brother, he wants to be doing everything Nico's doing, and now he can,” she said. “It's a wonderful opportunity for us and our family to have Luca be like any functioning child. It's a great opportunity for him to be able to interact with his peers who do not have disabilities.”

LaVallee noted the My Bike program experiences a pendulum effect. Now, there are more bikes than kids; but soon enough, he said, kids will be waiting in line for bikes as Variety strives to raise the funds for them.

Another My Bike presentation is planned at Tuesday's Altoona Curve baseball game, with young recipients riding their new bikes around the field prior to the game's start.

Applications for the My Bike program can be obtained on Variety's website at varietypittsburgh.org/MyBikeProgram.asp, or by calling 724-933-0460.

Gina DelFavero is a staff writer for Trib Total Media. She can be reached at 724-459-6100, ext. 2915 or gdelfavero@tribweb.com

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