PHOENIXVILLE >> A 10-year-old boy is helping a Bucks County motorcycle dealership in its efforts to raise funds for the fight against muscular dystrophy.
Lorden Joshua “LJ” Kidon, a fifth grader at Barkley Elementary School, is the 2015 Muscular Dystrophy Association ambassador for Brian’s Harley-Davidson in Middletown Township, near Langhorne.
LJ has Duchenne muscular dystrophy, a genetic condition in which “his muscles pretty much just start to fade and give out,” explained his mother, Erica Kidon.
“It’s terminal,” she added.
Kidon said LJ was diagnosed in June 2005, just a few months before his adoption by her became final. She added that he can “barely walk up stairs” now, and has to be lifted into a car, but was not using a wheelchair.
LJ sees “plenty” of doctors, including a neurologist and pulmonologist, Kidon said. While “his lungs are good right now,” he uses a breathing machine at night, she added. LJ has been going to a cardiologist since being diagnosed in April 2014 with cardiomyopathy, which Kidon described as the beginning stage of heart failure.
She pointed out that, typically, children with Duchenne do not qualify for heart transplants.
“He’s on three different medicines for his heart, but … if they don’t work, you’re looking for a miracle,” Kidon said.
Nonetheless, she added, LJ is “always smiling. He doesn’t let it get him down. He doesn’t get depressed.”
“He’s a wonderful little guy,” concurred Brian Bentley, the owner of the motorcycle dealership, who described the fight against muscular dystrophy as “a passion” of his.
He explained that the Harley-Davidson Motor Co. had taken on fundraising for muscular dystrophy “as a national project” in 1983, and that dealerships in an association covering an area as far away as Virginia had raised a total of $19 million over the years. Bentley added that “just about every dealership” was assigned a “local goodwill ambassador.”
LJ first visited Bentley’s dealership in February.
“He came into the store, and we took a little motorcycle ride ‘round the parking lot. He came in as a very shy young man. … Once we both got on the motorcycle, rode around, he became my instant buddy,” Bentley recalled.
LJ said the motorcycle ride “was awesome.”
On his visit to the dealership, LJ received “a bunch of little gifts,” including a knapsack, T-shirt and a Spider-Man face mask, Bentley said.
LJ and his family were also guests of honor at the Black-and-Blue Ball, a fundraising event organized by the dealership and held in Northeast Philadelphia on March 8. The event included a cocktail reception and live and silent auctions, Bentley said, adding that the “highlight” was remarks by members of three families affected by muscular dystrophy.
“As soon as LJ and I got in the door, we got whisked … for him to do pictures, a lot of people to meet him. It was really like he was a celebrity,” Kidon recalled.
LJ will also participate in the annual Ride for Life fundraising event being held from May 1 to 3 at the Camelback Resort in Tannersville, Monroe County.
According to Bentley, the itinerary includes a group ride to the Pocono Raceway, with a parade around the track. He added that the children who are able to will ride around the racetrack in sidecars. Bentley also said the Marshall Tucker Band will perform, with “an after-the-concert at the indoor water park” at the resort.
Additionally, as ambassador, LJ was invited to attend monthly meetings and become an honorary member of a motorcycle owners’ group.
“We have many dealership events throughout the year — usually at least one big event a month,” Bentley said. He added that, when LJ is available, “we’ll have him here, and he gets to meet the customers and hang out with his hog club members, and just be our face … for muscular dystrophy.”
LJ said being an ambassador was “cool.”
Asked if LJ’s cardiomyopathy would affect his ability to serve as ambassador, Kidon replied, “No way. It’ll make us go even harder.”
“I want a cure,” said LJ.
For more information or to make a donation to the Muscular Dystrophy Association, visit www.phlblacknblue.org.