My 4 year old son was born with Hyper IgM Syndrome, a 1 in a million, life threatening, rare Immune Deficiency. Inspired by his resilience during the long hospitals stays, two bone marrow transplants, and a life in isolation from other kids, we raise funds to help find a cure for this terrible disease. The Hyper IgM Foundation, which we support, is helping to fund research into gene editing therapies that may one day serve as a cure for Hyper IgM. While we hope that our son is cured from his 2nd bone marrow transplant, we honor his bravery by helping find a cure for the other families and children. Along the way we created, with the help of Facebook, a vibrant and active community for families - with over 150 families worldwide, we have built and active and supportive, rare-disease community. Many of these families felt isolated before, and now they have a stronger voice, advice from empowered patients, and access to experts.
Review from #MyGivingStory