VARIETY OF ILLINOIS STORIES

WHEELS ARE IN MOTION WITH VARIETY'S KIDS ON THE GO!

By Elizabeth Liwazer
Variety — the Children's Charity of Illinois

When Bonnie Rae Letton decided her daughter Wai-Yee (pronounced Why-ie, similar to Hawaii) should have her own bike for Christmas, she never expected a man named Tyger would lead her to the ideal model. Because Wai-Yee has Down syndrome, Bonnie's concerns were safety first, before recreation. Even though Wai-Yee loves to swim, Bonnie wanted Wai-Yee to join the family on their bike rides.

The adapted bike they borrowed from the Rockford Park District was pretty close to what Bonnie was looking for but it still wasn't quite right. Steering, peddling, and braking, in that order, were a challenge for her daughter. Bonnie managed the steering and braking, while Wai-Yee became a very fast peddler. When a mother riding with her disabled child on a side-by-side recumbent bike crossed her path, Bonnie knew that was the bike for them.

Above: Wai-Yee on her recumbent bike with Tyger, the man who built it for her.

Through some creative networking, Bonnie found Tyger, a wrinkled but energetic version of Lance Armstrong. A bicycle whiz, Tyger had assembled the exact sort of bike Bonnie wanted. He lent this model so Wai-Yee and her co-pilot could take it out for a spin. Tyger put together the Quadrabent Kit and customized it to Wai-Yee's proportions. Snapping her seat belt, adjusting the peddles to accommodate her short legs, and making sure she was angled correctly for her posture and good to go, Bonnie was relieved to finally give her daughter the means to roll with the rest of them together.

Bonnie and her husband Brian adopted Wai-Yee from China when she was 10 years old. At that time, she was the same size as their five-year-old daughter, Grace. Over the past six years, Bonnie and Brian added three more children to their family. It was very important to Bonnie that the children, ages 3, 5, 6, 11, and Wai-Yee, now 16, have an activity they could all do together.

We're bikers. Psychologically, it's been very good for the family. Now the whole family can do an activity together, and at least four out of the five kids love being outside at the same time. Before we got the right equipment for Wai-Yee, Grace would ask why we couldn't all go biking, she said. It's wonderful that we're able to sit side-by-side with Wai-Yee and be eye-to-eye. She was always turning around before. It's very reassuring to her to have us right there.

Like the millions of others looking for information, especially when it comes to funding sources, Bonnie found Variety "The Children's Charity of Illinois through Google.

I was relieved Variety was so responsive. The other scholarships and grants I investigated were more restricted. For example, you could only apply for children up to a certain age, and then Wai-Yee would be past that age by the time they had their meetings, Bonnie said. Without support from Variety's signature program, Kids on the Go! Sports Mobility Program, the Lettons could not have afforded the high cost of this adapted sports bike, which their insurance does not reimburse.

Because Variety provides durable medical equipment that insurance won't cover and the exorbitant costs exceeded their families' means, Bonnie's Internet search was right on target. A long-time supporter of children with disabilities, it is Variety's belief that every child deserves access to lead a full and active life. Dedicated to promoting and protecting the health and well being of children, Variety has an array of programs, such as this one, supported by fundraising endeavors. Variety of Illinois helps to give children with disabilities as much freedom and independence as they are able to achieve.

Although Wai-Yee is non-verbal, it's obvious how much she enjoys her special bike.

She loves music so we'll put her Walkman on, and she'll laugh and honk the horn. She's really having a great time! Bonnie said.

Elliot Meskis, nine years old, is another giddy rider. Like Wai-Yee's parents, Bob and Mary Anne Meskis's primary concern was for Elliot's safety. Diagnosed with Dravet syndrome (SMEI), similar to an extreme form of epilepsy, Elliot is prone to seizures. Considered to be a spectrum disorder, this syndrome, only named 30 years ago, causes severe developmental delays as well. This disease also causes ataxia, a gross lack of coordination that is often called the drunken sailor's gait.

Above: Eliot Meskis on his Freedom Concepts Discover Bike.

While some may long to live in warmer parts of the country, Illinois weather is better suited for those with Dravet syndrome. Unable to tolerate weather above 72 degrees, which triggers seizures, Elliot likes being outside as much as possible. Physical activity helps control the seizures, and like Bonnie Letton, Mary Anne was determined to find the right bike.

Filling out the application with Variety was such an easy process, Mary Anne said. Variety understands how imperative it is for these kids to have specialized equipment. Elliot used to feel really frustrated when he would see other kids riding outside or if he couldn't do something. There is such a noticeable boost in his confidence now.

Their Freedom Concepts Discovery Bike has large extended wheels and a third one in front, which often inspires Elliot to take his hands off the handlebars temporarily to fly through the air. They go to the state park where he rides in the shade and his older brother or sister jogs next to him.

We had such a long fight with the insurance company to cover the cost of an adapted stroller, even though it is a medical necessity. We eventually had to give up and buy it ourselves. Elliot's bike is such an important therapeutic instrument, but we didn't even try to go to the insurance company for the bike, Mary Anne said. Unfortunately, we don't qualify (for reimbursement because of our income level) but there is that gap where we pay for medication and other necessities out of pocket.

Like all parents, Elliot's are gratified to see their son have a good time and becoming more self-assured. Even though it wasn't a Christmas present, Elliot's zest for riding has been a gift for the whole family.