Doctors say the rare generative muscle condition is a death sentence for young boys.
MANALAPAN -- Jim Raffone is doing whatever he can to help his 6-year-old son, who was diagnosed with a rare degenerative muscle condition, avoid what he says is a death sentence.
Raffone started the JAR of Hope foundation after learning in September 2013 that his son had a mutation of Duchenne Muscular Dystrophy that only 120 others in America, all young boys, have.
Raffone has raised money from countless events, including an attempt to break the Guinness World Record of most people doing pushups simultaneously.
But if the foundation can muster up another $85,000, the University of Minnesota will start a two-year study on the effectiveness of hyperbaric oxygen chambers in the treatment of Duchenne. This study would build on a current treatment James Anthony Raffone, or Jamesy as his family calls him, has received since January 2015.
"We are under a death sentence," Jim Raffone said in a prepared news release. "And the clock is ticking. It's the ultimate nightmare for any parent. We need to raise $85,000 to give these boys a chance at life."
Duchenne is a genetic disorder that leads to muscle degeneration and weakness. It is often found in boys between the ages of 3 and 5. There is no cure for the disorder. Those who suffer from Duchenne are often in a wheelchair by the time they are teenagers and dead by their early 20s.
Dave Dornfeld, an osteopathic doctor in Middletown who leads Jamesy's treatment, said Jamesy has shown improvement after 15 months, more so than other boys in his group.
"Hyperbaric therapy allows for an increased concentration of oxygen to be delivered through the tissues, and that's what allows for tissue repair," Dornfeld said.
Doctors with the University of Minnesota are hopeful that a cure for Duchenne is near.
"There's no doubt we're making progress," said DeWayne Townsend, a research physiologist who will direct the new study in Minnesota. "Right now, thousands of scientists around the world are working to discover a cure for Duchenne. And from these discoveries will emerge a cure."
As of Nov. 23, the JAR of Hope foundation has raised more than $132,000. For more information on the group and to donate, visit the foundation's website at jarofhope.org.
Alex Napoliello may be reached at anapoliello@njadvancemedia.com. Follow him on Twitter @alexnapoNJ. Find NJ.com on Facebook.