Supporting the Mitochondrial Medicine Frontier Program at CHOP.
This foundation was created in honor of our 2 sons, Cooper and Cash, to help fund research for treatment for Alpers disease. Alpers is a rare mitochondrial disorder that affects major organs of the brain, eyes and liver. Our younger son, Cash had just celebrated his 1st birthday when he started to go into liver failure, which is when we discovered he had this disease. The severity of the liver failure required Cash to need a liver transplant right away. Thankfully, his dad was a perfect match and both of them under went transplant surgery immediately. The transplant allowed Cash's life to be prolonged a few more years before he went home to heaven.
Through the transplant process, Cash had severe brain trauma as a result of Alpers, which made him lose the ability to control his legs and arms. But we believe that he is in heaven now with a fully functioning body, running on those streets of gold, which is the basis for this foundation.
Shortly afterwards, we found out that our other son, Cooper also had the same genetic mutation. At his most recent doctor’s visit with the Frontier Program, we were told that they are in the beginning stages of treatment trials which can eventually lead to a cure. While we continue to stay strong in our faith, we are doing everything we can to speed up the process to a cure.
This is our story, some parts are very sad, but other parts offer hope of a promising future. We are not alone as there are many others that have suffered from Mitochondrial Diseases, so we invite you to join us on this journey to find a cure!
The Children’s Hospital of Philadelphia is one of the worlds foremost centers for children’s medicine and houses the Mitochondrial Medicine Frontier Program. The MMFP is emerging as the premiere center in the world for multidisciplinary clinical care, advanced diagnostics and therapies, and individualized basic, translational, and clinical research programs dedicated to improving the health of patients of all ages living with mitochondrial disease.