Her own set of wheels

While commemorating ADA’s 25th anniversary, a children’s charity presents a special bike to a 10-year-old girl with Dravet syndrome

To say that Olivia McGurk was ecstatic to get her first bicycle Saturday would be an understatement.

“I really like the pink. Pink is my favorite color. It matches my socks ... and the bow in my hair,” the 10-year-old Beaver Falls girl said moments before jumping on her new bike for a celebratory ride in Webb Park in Rennerdale.

And what a moment it was. Because of a catastrophic seizure disorder known as Dravet syndrome, Olivia has not been able

to ride a conventional bicycle during her young life.

The one she received from Pittsburgh-based children’s charity Variety was custom made for her at a cost of $1,800. It has a front wheel, two back wheels, a safety brake, a lap belt and a rear steering bar for an adult to use to help guide the bike until Olivia is able to do so herself.

Since starting the “My Bike” program in 2012, Variety has raised nearly $2 million for the initiative and has given away more than 1,000 adaptive bicycles to children with disabilities.

Saturday’s presentation, part of a 25th anniversary celebration of the Americans with Disabilities Act, was bittersweet in one respect. Olivia’s 13-year-old sister, Leah, who has the same disorder, was to take her first ride on her own specially designed bike during the Bender Consulting Services family picnic but wasn’t able to attend after suffering a seizure Friday night. She remained in the hospital Saturday as a precaution. Still, Joe McGurk, father to the girls, was thankful for the bicycles and what they would mean for his daughters.

“Just the ability to get out, to get some exercise with their brother and sister, to be able to do something they see normal kids doing that they’ve been restricted from until now because they don’t have the proper equipment to enjoy riding a bicycle, these bikes will give them that,” he said. “Just that sense of independence, mobility, that sense of normalcy is something they’ve been lacking until they got these bikes.”

Bender Consulting Services recruits and hires people with disabilities for public and private sectors. Its family picnic this year commemorated the ADA, the 1990 civil rights law that bars discrimination against people with disabilities.

Since its passage, the law has ushered in a slew of accommodations that most Americans now take for granted, such as special curb cuts for people who use wheelchairs, TV close captioning,

Joe McGurk and accessible restrooms, hotel rooms, offices, and apartments.

Fittingly enough, Tony Coelho, the former U.S. congressman who was the prime sponsor of the law and who battled for three years to get it enacted, was on hand for Saturday’s picnic and Olivia’s first spin.

Asked to assess the law after a quarter-century on the books, Mr. Coelho, who has epilepsy, gives an answer that is both challenging and hopeful.

“I am disappointed that we haven’t made as much progress as I thought we could. I am thrilled at the progress we’ve made. The reason I put it that way is that we’ve made tremendous progress. But there’s so much more to do,” he said.

“It’s great to celebrate the 25 years but I don’t want to dwell on that. What I’m interested in is where we’re going and are we making an impact. Yes we are. So much more to do. That’s where I want to stay focused.”

He believes two areas that need to be addressed are the lack of employment and transportation options for people with disabilities.

The former, he said, has been given a boost by an executive order signed by President Barack Obama that requires federal contractors and subcontractors to work toward the goal of having 7 percent of their workforce made up of people with disabilities.

“The last five presidents, I told them that there’s no group in America that wants to pay taxes except those of us with disabilities,” he said. “The reason we want to pay taxes is pretty obvious: It means we have a job.”

While work remains to be done, the ADA has been a godsend to the McGurk family. Leah, Mr. McGurk said, has a service dog that helps to provide mobility, safety and companionship. It also can sense when seizures are about to occur.

Without the ADA, he said, restaurants, businesses and others could deny access to the dog. The act also has helped to make facilities more accessible and provided school transportation for the girls.

“You can’t measure the value. I mean it’s immeasurable how valuable it’s been to our family. Like I said, it is what makes 90 percent of what happens every day with my kids possible,” he said.

out, to get some exercise with their brother and sister, to be able to do something they see normal kids doing that they’ve been restricted from until now because they don’t have the proper equipment to enjoy riding a bicycle, these bikes will give them that ... that sense of independence, mobility, that sense of normalcy is something they’ve been lacking until they got these bikes.”