Hi family, friends, and colleagues,
Most everyone has a reason to raise money for a charity that hits close to home. Mine happens to be linked to my nephew Hyde, a 3 year old, with a rare disease that has no cure. He's a cute & innocent child that endures a lot more than most kids or adults could ever imagine. Nightly 10 hour dialysis, an assortment of medications taken throughout the day, his blood pressure taken & he's weighted twice a day, frequent doctor & hospital visits, restricted diet, that includes almost no water or beverages, the list goes on.
This rare disease, called Atypical HUS, that is in his liver, adversely affects his kidneys to the point of failure. After being diagnosed 2 years ago, the doctors informed us that it's time to remove his kidneys, which haven't functioned in almost 2 years. No replacement kidneys are planned because they would also be adversely affected by the liver. He is a candidate for a double (liver & kidney) transplant, but the risky procedure has only been attempted 6 times on children that young and with HUS.....only 2 of them survived.
Last year was the inaugural year for the Hike 4 Hyde, an event to raise money for the research & awareness of the disease and the hunt for a cure. The Hike (which is an actual mild/moderate hike up Sawnee Mountain in Georgia) was put together by family and friends. It was a great success and had more people respond, give, and participate than imagined. With all volunteers running the show and most of the equipment donated, the money raised eclipsed $20,000. The money raised went directly to the 2 organizations working with the disease.
This year the hike will be held in honor of 3 children with this disease: Hyde, Bryan, and Kegley. This hike is held at Sawnee Preserve Park in ####, GA on April 17, 2010.
A friend of the family put together a video of Hyde and used many photos taken by a woman from a local newspaper that ran an article on him
If you can make it to the hike, please register!0
(The AHUS Foundation is a non-profit organization and any donations are tax deductible.)
Warm Regards,Warren & Sarah