Making Family Memories While He Can
Meet James Raffone
Live Sparkly Wish: A day of love for the family
Every day is a gift – and James Raffone (Jamesy), age 10 and his family embrace each and every day. Diagnosed with Duchenne Muscular Dystrophy (DMD), a fatal pediatric and progressive disorder that leads to muscular degeneration and weakness in the muscles, Jamesy’s heart is now afflicted. With mobility worsening and his ability to walk decreasing, doctors predict Jamesy will become wheelchair-bound by age 12 and likely quadriplegic by age 15. Most boys with this severe form of muscular dystrophy will not survive beyond their early 20’s. Jamesy loves to play video games and his family spends every moment of their time trying to find a cure for the disease. Jim, Jamesy’s dad, created a non-profit called “JAR Of Hope” to raise awareness and funds to support research aimed at finding a cure and preventing others from facing their same heartbreaking reality. Shelley’s wish is to give this entire family a day of love where they do not have to think about bills and worries and simply focus on “wants” instead of “needs.” Jamesy has two loving sisters, Julia, 15, and Marianna, 16. Laura, Jamey’s mom, pulls the family together to make every day special in the Raffone household.
Nominated by: Origami Owl Designer Shelley Licknack who met this family through a fundraiser to help them raise money and awareness for their non-profit “JAR Of Hope” and will continue to do so.