If you want to go far, go together. Hunter’s Hope was formed in honor of my sweet, funny, “best guy” Grandson, Hunter. My dear friend Sheri, whose sons also have an (ultra) rare disease and I spent many coffee dates talking about how we needed to be proactive in furthering research, helping others in our situation and increasing awareness. So, here we are, committed to making a difference for the
better. I’ve learned so much on this 8 year journey and I expect I will continue growing, studying and feeling things I never dreamed would be a part of my life. Having a (grand) child with a rare disease is lonely, devasting really, harsh and yet you find joy you never knew existed and hope you thought was gone. You literally, make yourself, live in this day and try not to let the future control your thoughts. Initially at diagnosis we were shocked and grieved in ways I never knew existed. For me personally, I watch my beautiful daughter and her husband as they are overcome with the pain of this diagnosis and although I am not Hunter’s parent, I am his Nana. I see 2 generations desperately trying not to get consumed with the inevitable. I also see a very happy little boy that is funny, enjoys school, his friends, loves his family and dog and lives his life to the fullest. And we all revel in this beautiful child. Through my own process, I was told that we are in a state of constant “anticipatory” grief. We grieve what could/should have been, the things that our sweet boy will never get to do, the reality of the future, then the losses as the disease progresses and whatever else Duchenne throws at us. Many families pay for everything out of their own pocket, with no assistance. Regardless, if they have assistance or private insurance, they are stuck in a system that will ALWAYS deny the first application for a wheelchair, insurance companies that only allow 1 chair every 5 years even if your child no longer fits in their current one and on and on and on. Everything is a fight, even though this is a disease with a known prognosis and outcome. Families with a devastating diagnosis, a broken system that requires them to fight for what their child needs, significant financial stressors and trying to make the best decisions to care for their sweet child. Hence, Hunter’s Hope for Duchenne and DEGS 1 Leukodystrophy. Our mere existence is to provide HOPE, through funding research to find life sustaining treatments, financially helping families with non covered insurance equipment and assisting with expenses that will improve their child’s life and helping our community to understand these rare diseases and the journey of these beautiful families. We will make this easy for families that apply, because this should not be a fight! I recently heard this old African proverb: If you want to go fast, go alone. Hunter’s Hope for Duchenne and DEGS 1 Luekodystrophy will “GO TOGETHER”. Thank you for taking the time to read all the way through this. Please “GO TOGETHER” with us, in whatever way works for you. We need YOU! Board Chair and Director: Susan Samuelson
