A Curtice family welcomed a group of very special guests who dropped – or rather, rolled in for lunch July 18. Tammy and Scott Henegar waited with anticipation for the arrival of the JettRide – a cross-country cycle tour for teens to raise funds and awareness to fight Duchenne Muscular Dystrophy.
It’s a cause close to the Henegars’ heart. Two years ago, their son Braedan, now 6, was diagnosed with Duchenne – a progressive muscle disorder that causes loss of muscle function and independence.
Duchenne – one of 43 muscular dystrophies – affects approximately one in every 3,500 boys, according to the Jett Foundation, an organization founded in 2001 by Christine and Stephen McSherry after learning the devastating news that their then 5-year-old son Jett had Duchenne.
|Front: Paul Nason, Braedan Henegar, Megan Drake, Kristyn Marino,
Middle: Colby Chase, Justin Marino, Ty Miller, Courtney Burt, Mac
Sullivan. Back: Joe Loviska, Drew Gottman, Alex Scroggins, Jackson
McSherry, Jack VanHouten and Megan Matrka.
Because the Duchenne gene is found on the X chromosome, the disorder manifests primarily in boys. There’s no known effective treatment or cure – most kids with the disorder are confined to a wheelchair by the time they are 12 and succumb to the disease in their late teens due to respiratory failure.
The foundation’s JettRide bike-a-thon, which started in 2007, aims to raise awareness and funds for Duchenne research. The JettRiders are the teenaged siblings, relatives and friends who raise funds and sign up for the sometimes grueling ride in support of those who can’t.
This year’s route is taking riders from Minneapolis to Point Pleasant, N.J. for four weeks, the teens and their leaders are braving the heat, the rain and other bumps in the road, motivated by their mission.
The riders made the stop at the Henegar’s Yondota Road home to visit with young Braedan on their way from Temperance, Mich. to Sandusky.
Joining them on the 20-mile leg of the journey in support of Braedan were Starr Elementary School gym teacher Jeremiah Przybylski and Braedan’s pediatrician, Dr. Wendy Wexler, who each donated $100 to become a DayRider with the cycling tour.
The riders enjoyed lunch and a refreshing dip in the pond and relaxed and took some photos among the tall corn stalks in the field adjacent to the Henegar’s home.
“Meeting the kids with Duchenne – this is what it’s all about, what keeps us going,” said JettRider Paul Nason, a retired vocational instructor from Connecticut who participated in the 3,700 mile coast-to-coast JettRide in 2010.
“If I were doing this for fun, there’s no way I could have been able to ride for 80 miles with road temperatures at 110 degrees,” he said. “But we deal with it, because we know we’re riding for a good cause.
“This is a terrible disease, something these kids didn’t ask for,” he said. “I didn’t know anything about Duchenne until a friend sent me a DVD on the topic – right away, I knew I wanted to help find a way to help these boys.”
The team tries to average 50 miles a day. “We’re flexible, though. Some days we do more, some days less,” Nason said. “Today we rode only 20 miles, but that’s ok, because we got to spend this time with Braedan.”
Over the past decade, the Jett Foundation has raised almost $2 million for Duchenne research. The foundation currently funds the Jett Program for Pediatric Neuromuscular Disorders (JPPND) at Mass General Hospital for Children. It also provides resources for treatments, adaptive activities and advocacy services for families affected by Duchenne.
Though Braedan is doing well, his diagnosis has meant a major change for the Henegar family. “We have to now incorporate daily stretching, watching his diet, doctor’s visits and physical therapy and occupational therapy appointments,” Tammy said. “We also swim twice a week, and he does therapeutic horseback riding too.
“We will do anything to keep him mobile as long as we can,” she said.
The Henegars support the Jett Foundation, and they have also worked with Cure Duchenne, Parent Project Muscular Dystrophy and the Muscular Dystrophy Association.
Last weekend, the family traveled to Dayton for a Wooden Bat Tournament to help “Strike out Duchenne” with the Brick City Blast Baseball Team.
In an extra effort to raise awareness and funds, they started their own non-profit, which is called Braedans Bridge. They have also started a parent’s support group. Visit http://braedansbridgetoendduchenne.blogspot.com/ for more information.