I am supporting the Courage Classic for my son, Ryan. It’s only year #4 of the Courage Classic for our family, but it’s year #8 of living with a life-threatening medical condition. While the initial shock and fear of his diagnosis is long gone, the day-to-day mission of raising our child while navigating his rare condition remains. Thanks to the outstanding care he receives at Children’s Hospital Colorado, he is successfully managing a condition he will never grow out of and the Metabolic Clinic has been with us every step of the way since he was 3 days old.
Outwardly, Ryan is a completely normal eight year old, but on the inside, he is so much more! Not only does his metabolism work differently than just about everyone else’s, but he also has a heart that is filled with bravery and compassion beyond his years. I have lost count of the number of times he’s been stuck with needles and IVs or spent the night in a hospital room, but his joyful disposition always shines through. We are so proud of the smart, strong and kind-hearted young man he is becoming despite this crazy curve ball that life has thrown him.
Every summer, our entire family rides for two days over some seriously steep mountain passes to raise money to support the Gene Team and the work they do 24 hours a day, 365 days a year for families like ours. Coronavirus has changed the format a bit this year, but the funds we raise still support the same vital things, like research to enable earlier identification and improved outcomes for kids and families with metabolic conditions. It also supports the development of resources that explain complicated conditions in terms that kids, families, friends and teachers can understand (Gene Team funds helped us publish Max the Monkey has MCADD!). One day, we hope that the clinic will have enough in their budget though our Gene Team efforts to bring on more physicians who wish to be trained in these complicated conditions and to start a camp for kids with Ryan's condition so that he can meet other kids like him.
Thank you for your continued support, especially in this crazy year. Every dollar makes a difference!