We Need To Save The First Child

by JIm Raffone




Campaign has ended


The greatest title I have, is that of Dad. To hear anyone one of my 3 children call me Dad, it just fills my heart with so much joy. In my early 20's I couldn't wait to have children. First came my daughter Mariana, then Julia then the prince; James Anthony Raffone. He is affectionately known as Jamesy.

My world was complete and my world was caring for my children. One September 13th, 2013 my world as I knew it ended. Jamesy was diagnosed with a terminal muscle wasting disease known as Duchenne muscular dystrophy. A geneticist told me, "to go home and love him bc there is nothing I could do to save his life".

For the past 8 years and 5 months, I have been fighting Duchenne md with every fiber of my being. To see Jamesy's body exhibit the affects of this disease cuts me to the core. Jamesy has been battling this disease every sec of every day since he's was born. He fights and fights. Hospital visits after hospital visits, shots, infusions, tests, stretching and more test. He NEVER complains. He does what he is asked to do. The one thing he asked, "please make it stop"!  But to know its been 200 years and not one child has every survived brings me to my knees. 

For the past 8 years, I have traveled the world in search of a cure or someone who could help me. Stopping along the way to help other families navigate this nightmare.

This time we are traveling to Katmandu, Nepal. To show the world just how desperate we are to find a cure. This fight is not just about Jamesy. There are Jamesy's all over the world that need help. After we film the families in Katmandu, the courageous team and I will climb Everest 17,598 feet to base camp.  I know the cure is not at the top of Everest but after hearing Jamesy spoke with his history teacher about what I was contemplating and hearing the conversation between him and Mr. Shriek (yes, Mr. Shriek), I knew I have to do this for him. Jamesy came home and told me, "ya know people DIE on Everest". I replied, "I know.

JAR of Hope is sending a team of courageous men to climb MT. EVEREST. Yes, Jim and a small group of men will be traveling to Nepal to climb their way to the base camp of Mt. Everest.  17,598 feet into the sky the team will be climbing to raise awareness and funds to find a cure. 

JAR of Hope will be filming a documentary about this historic journey. First, bringing a film crew to Katmandu to record how children with Duchenne live there. How poor the conditions may be. What the children might be lacking. JAR of  Hope is hoping to bring resources to Katmandu to help these families but we need your help to do this.