I am riding the Courage Classic to aid children like my Grandson Luke who suffer from mitochondrial disease.
Luke was born a seemingly healthy and happy boy. At about three months of age digestive problems and slowing weight gain led to the discovery that his heart exhibited HCM, a serious condition where the heart wall is thickened and pumping efficiency is reduced. Sadly, Luke's heart issues turned out to be only one symptom of what turned out to be a much more complex mitochondrial disorder. Formal diagnosis of MERRF syndrome was made using muscle biopsy test results.
MERRF robbed Luke's body of a significant portion of its energy generation capacity. Despite the significant challenges Luke and his family kept an upbeat attitude. They worked closely with Children's Hospital staff to find solutions.
Luke contracted a seemingly minor viral infection a few weeks after his first birthday. Luke's body was unable to fight off the infection and he was admitted to Children's. Luke spent 8 weeks in the Pediatric ICU with his family by his side. Without the support of the Children's Hospital staff and volunteer organizations this period would have been unbearable. I saw first hand how important the work of the Children's Hospital Colorado Foundation is to patients and their families.
Luke will not be the last child to face a life-threatening illness, and his family will not be the last to navigate a frightening diagnosis. The Courage Classic is both a personal challenge and an opportunity to support positive outcomes for kids and families who rely on Children's Colorado for care.
I truly wish I could share a happy ending with you to Luke's story. He sadly passed at just 16 months of age. He lives on through tissue donations and in the hearts of all who knew him. Our hope is that sharing his story will help raise awareness of mitochondrial disease and promote fundraising for research to battle this dreadful disorder.
Thank You in advance for yout support
-Tom
