MANALAPAN — The community came together recently for a 6-year-old boy who is battling a rare, fatal disease.
The Manalapan-based JAR of Hope foundation held a fundraising gala at the Battleground Country Club, Manalapan. The foundation sold out all 300 tickets for the event — at $150 per ticket — bringing in $45,000, according to a press release.
JAR of Hope was started two years ago by Jim and Karen Raffone after their son, Jamesy, was diagnosed with a very rare mutation of Duchenne Muscular Dystrophy.
Only 119 other children in America — all boys — have this mutation. Without a cure, these boys will be in wheelchairs by their early teens and die by their early twenties, according to the press release.
“When our son was diagnosed,” Jim Raffone said, “the doctors told us there was no cure and that drug companies would not even research cures for a disease affecting only 120 people. They told us ‘just take him home and love him until he dies,’ but instead of waiting for him to die, we decided to do something about it. So we started the foundation to help all the families that had been told the same thing.”
“We are truly touched by the support given by this community to these boys,” Raffone said. “People did not have to spend that kind of money to come. … It is not their son who is sick, but they wanted to. Monmouth County and the surrounding counties have shown us the true meaning of caring, and it is a lesson we will never forget.”