Since being diagnosed at sixteen months old Henry (now 14) takes 51 doses of medicine per day to maintain his condition and hopefully stabilize this disease. He also takes a eye drops multiple times per day to reduce the cystine crystals in his eyes that feel like sand. For 4 years he took Growth Hormone shots 6 days a week. He has occupational therapy weekly, blood draws every two months and is seen by a kidney specialist quarterly to monitor his kidney function. In March 2021 we will be having our 12th annual ski event at Schweitzer Mountain Resort. With your help, life free of Cystinosis is within reach. Today 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. Over the last year there has been a stem cell transplant trial be conducted that is showing promising results to stop the progression of Cystinosis. This trial would not of been possible without donations like yours. Thank you for supporting our family's race to save Henry.
To learn more about Henry and Cystinosis please visit www.24hoursforhank.org