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About 24 hours for Hank
24 hours for Hank is a non-profit 501c set up by friends and family of Henry Sturgis. Our hope is to find a cure for Henry and all children that suffer from Cystinosis. Because Cystinosis is considered an “orphan disease” all research funds are generated by the private sector. We are proud to be in partnership with the Cystinosis Research Foundation. Thanks to their hard work funds have already been raised through private individuals and businesses to start research for better medication and hopefully a cure. Thanks to the CRF, just this year a slow release formula of the powerful drug that helps our children was developed, changing the daily dosage to only twice a day.
Hopefully it will be approved by the FDA by 2010 so Henry can start using it. 24 hours for Hank with your help, will support the CRF to fund the researchers and doctors that hold Henry’s future.
24 Hours for Hank is a non-profit, tax-exempt entity pursuant to Section 501(c)(3). Federal Tax ID #26-2856413. All net proceeds of the funds raised will go directly to The Cystinosis Research Foundation to support medical research. Your gift is tax deductible.
About Henry
Henry was diagnosed with Cystinosis in November 2007 after seeing a team of specialists at Children's Hospital in Seattle. He was 16 months old. He then began the demanding medication schedule of five different medications every 6 hours, 8am, 2pm, 8pm and 2am.
Before Henry was diagnosed the disease had already caused him to develop other problems including Fanconi Syndrome (kidney failure) and Hypophosphatemic Rickets (bone disease that causes soft, bowed bones). The nutrient imbalances due to these conditions cause increased urination, thirst, dehydration and abnormally acidic blood levels.
Henry recently had a successful operation for the placement of a g-tube in his stomach so his parents can administer the medications through the tube instead of forcing him to drink them. They have seen improvement in his health and hope that he will be walking soon, maybe even by his 2nd birthday on July 19th.
Since being diagnosed Henry has had to take approximately 840 doses of medicine to maintain his condition. He has occupational and physical therapy every week, blood draws every two weeks and is seen by a kidney specialist every month to monitor his kidney function.
Despite having a terminal illness, Henry is a happy and courageous little boy who makes those around him appreciate life and the true gift he is.
Current Research: