We know what to do when our kids scrape their knees, or fail their first algebra test. We know to support them and love them, to help but not coddle. It’s challenging to watch our kids face life’s obstacles, though we know that they’re far more resilient than we give them credit for. But when your child has a terminal disease, when there’s a hurdle you can’t help them over, your role as a parent becomes infinitely more challenging. The way you support them might look a bit different, and you may need to get creative when it comes to being their biggest cheerleader.
Jim Raffone from New Jersey has an 11-year-old son named Jamesy. Jamesy was born with Duchenne Muscular Dystrophy (DMD), a progressive and terminal disease that causes muscular degeneration. Though there are some treatments to reduce symptoms and potentially slow the progression of the disease, DMD has no cure.
When Jamesy was just four years old, his muscular weakness became apparent. After a whirlwind of tests and visits to various doctors, Jamesy’s parents received the heartbreaking news.
“Initially, it tore our heart out. I don’t think it stopped hurting ever since,” Raffone told The Patch. “It’s just a devastating disease that makes you watch your child waste away in front of your eyes. The doctors told us back then and still to this day, that there’s nothing that can be done for him. Just love him until he passes, but that’s not something I can accept and I choose to fight every day for him.”
And fight he did. Raffone founded a nonprofit called JAR of Hope in 2013, holding fundraisers to help find a cure for DMD. Jamsey’s parents have completed some incredible feats to raise money in honor of their son, from a 171-mile run to a grueling 12-day hike through Australia and New Zealand. They have raised over 2 million dollars, funding research, experimental therapies, and medical bills for struggling families.
A recent experimental therapy has proven helpful in the cases of several kids with DMD, but Raffone needs to raise more funds to expand the study. Through JAR of Hope, he hopes to raise $2.5 million by early next year for the promising trial. To give his fundraising a running (or walking) start, Raffone is completing a 260-mile walk from D.C. to New Jersey in an event he calls, ”Walk For Their Lives”.
Raffone plans to meet anywhere between 500-1,000 people during his 8-day trek, raising money and awareness for the devastating disease.
“Team Jamesy will continue its journey of a thousand miles by bringing awareness to Washington DC. This attempt will include 260 miles over 8 days from our Nation’s capital to New Jersey on foot,” the event’s Facebook page explains. “Jim Raffone has committed to doing anything and everything to save his son and other children inflicted by this devastating disease. The discomfort, struggle and agony that will be endured along this trek will be temporary, the potential ramifications of a successful trial will be forever.”