KIDS ON THE GO! ARE GOING ALL THE WAY ...

WITH A LITTLE HELP FROM VARIETY - THE CHILDREN'S CHARITY OF ILLINOIS

By Elizabeth J. Liwazer
Variety - the Children's Charity of Illinois

Hello, this is Blake. I understand you want to speak to me about my sports chair, said the voice on the other end of the phone. Although he sounded like a typical middle school kid, his confidence and maturity revealed quite an extraordinary 7th grader.

Blake Harmet was born with Spina Bifida. It's a hole in the spinal cord that prevents brain information from coming through, he explained. Actually, the incompletely formed spinal cord is one of the most common birth defects with a worldwide incidence of 1–2 cases per 1,000 births. In the United States, the rate is 0.7 of 1,000 births. And around the world, it is estimated that 150 million children have some form of physical and/or mental disability.

Just less than 100 pounds, Blake is no 98-pound weakling. An enthusiastic athlete, Blake plays softball, soccer, sled hockey, and skies on snow and water — when he is not fishing or kayaking. Blake's favorite sport now is basketball because he finally has the proper equipment to compete. He loves playing with his twin sister, who sometimes out dribbles him and had the home court advantage before he received his sports chair. As a proud member of the Junior Varsity (JV) team, he is psyched about going to the state tournament.

Above: Blake, seated in his wheelchair.

Although he has been playing since he was six years old, Blake only got his first proper sports chair last summer. His All Court Chair for wheelchair basketball is a snazzy titanium number with rollerblade wheels on the sides and a fifth one in back. Now he can twist and turn and make the 10-foot shots that were out of his reach when he was strapped in his regular chair. Because health insurance doesn't cover mobility sports equipment, and providing for the enormous cost is most often out of their families' reach, many disabled kids have to roll with what they have.

Members of Variety "The Children's Charity of Illinois want to see every child thrive and believe each deserves access to lead a full, active life. Through its programs, such as the Kids on the Go! Sports Mobility Program, and various fundraising initiatives, Variety of Illinois helps to improve the lives of disabled children. This mobility program is part of the national Variety effort to provide support for children and their families in the form of durable medical equipment.

The other kids were just blowing past him before he got his sports chair, said Trent Thenhaus, the Adaptive Sports Coordinator for Western DuPage Special Recreation Association and Blake's coach for the Windy City Warriors. He's a high-spirited kid but he would get frustrated when he was passed up. His confidence has really improved and he feels so much more a part of the team.

Even though he doesn't wear a cape, Trent is a hero to Blake, Dannie, and Douglas. Focused on ensuring that each member of his team has a sports chair, Trent steered the boys' parents toward the opportunity Variety provides children 21 and under whose physical disabilities restrict them from moving freely and independently.

Above: Trent (on the left) and Dannie (second from the left).

Douglas Davison, 13, is one of Blake's buddies and also has Spina Bifida. A thoughtful young man, Douglas likes to read and discuss philosophy, religion, politics. Like so many others, his insurance company rejected Douglas's claim for a different chair. More into academics than sports, perhaps because he didn't have the right gear, a teacher encouraged Douglas to try out for the basketball team.

Before he got his sports chair, the other guys would spin around him. Doug would be half a court behind, said Ken Davison, Douglas's father. He's come a long way as he's progressed through the game. Doug has learned how to run with a play and work with the team. The similarly disabled technician who outfitted Douglas explained that he would no longer just be in the chair, but that he would be playing as a unit with the chair. Having their own equipment is really special and he's very proud of it. Doug will show it off and let his friends give it a spin.

When the kids are dribbling on the court, the parents are in the stands relieved to see their children exercising and socializing. While the moms and dads exchange information about recommended neurosurgeons, catheters, and other equipment, they marvel at the difference in their own kids and can see from their vantage point how well the team is doing.

One guy who has experienced a more extreme makeover is Dannie. Having the right chair has really helped Dannie Ocasio get into shape and build his muscles. At 15, Dannie is on the JV team and has Cerebral Palsy, a condition that occurs during pregnancy or at birth that causes damage to the motor control center of the brain. Instead of playing video games cooped up indoors, Dannie is outside shooting hoops or throwing a Frisbee to his older brother from his sports chair.

It's wonderful! There is such a big difference from playing in a regular chair. I can maneuver much faster and it's a lot more fun, said Dannie.

The biggest thing is that it's seriously changed Dannie's life. He's on a workout program three times a week and he looks forward to coming to basketball on Saturdays. Dannie had never played on a competitive sports team before. Getting into shape and gaining in muscle mass is very important, especially for those with Cerebral Palsy. As he becomes more physically defined, you can really see his confidence increase, Trent said.

Knowing that Variety "The Children's Charity of Illinois is in his corner has been a huge boost for Trent's confidence, too. It costs $20,000 to cover the expenses for a typical season and Trent is tireless about finding support for his amazing players. With help from Variety, Trent is closer toward meeting his goal of seeing every member of his team play in a proper sports chair. Only then will his group be able to compete on an even playing field. As new sports mobility technologies develop, it is Variety's goal to see children with disabilities have every advantage and benefit available.