This is my 11th year with my Team and to celebrate, my son is going to be competing with me. He was born right around the same time we started this race, so it's only fitting we should start sharing this journey! We are soooo close to finding a cure. Please help our team in any way you can.
Since being diagnosed Henry takes 43 doses of medicine per day to maintain his condition and hopefully stabilize this disease. He also takes a Growth Hormone shot 6 days a week. He has occupational therapy, physical therapy, and speech therapy weekly, blood draws every two months and is seen by a kidney specialist quarterly to monitor his kidney function. In March 2019 we will be having our 11th annual ski event at Schweitzer Mountain Resort. With your help, life free of Cystinosis is within reach. Cystinosis is an incurable disease that only affects approximately 500 people, mostly children in the US and 2,000 worldwide, based on these rates, Cystinosis research is primarily funded through private donations. Time is of the essence - Thank you for supporting our family's race to save Henry. To learn more about Henry and Cystinosis please visit www.24hoursforhank.org