Hike for Hyde
About Hyde
Probably a lot of you have heard about what's been going on with our son - Hyde since January of 2008 - if not - we spent a majority of the time from January 2008 - June 2008 in and out of Egleston and have finally figured out that he has a crazily rare disease called Atypical HUS (about 300-600 cases total in the US). Basically his version of this disease means Hyde has a mutation in the gene that produces Factor H which helps control your immune system. Hyde has struggled with kidney failure, severe high blood pressure, anemia, extremely low platelets, etc. and is currently on long term peritoneal dialysis which we do at home every night for 10 hours each night. He's actually feeling very good and more stable than we've been in a while - but the dr's basically think his kidneys are permanently damaged. At this point - the only potential way to 'cure' him would be a combined liver and kidney transplant and this is very risky in the best of circumstances and REALLY scary with w hat Hyde has because it's not fully understood.
Our next best hope (which is what we are currently banking on) is that research that is currently being done will come up with a replacement Factor H therapy that would allow Hyde to have this treatment for the rest of his life and then do a kidney transplant only. A brand new potential is the drug Soliris that is currently NOT FDA approved for AHUS but several kids have had absolutely amazing responses to this - including Bryan Hearn who is from Lawrenceville and whose family is helping with this year's hike. Again - for Hyde this would entail the experimental drug along with a kidney transplant - so we continue to work for more research and information on our options.
So - that being said - the only thing we feel like we can do (other than keeping Hyde stable and happy) is to help raise funds for research that might prove invaluable for him in the future. We are working now on a fundraiser ourselves with family and friends in the spring - but there is a Foundation for Children with Atypical HUS that is an IRS approved non-profit that another parent started years ago. They work very closely with the dr's that did our genetic testing and also give out grants based on research applications into either improved testing or replacement therapies.
Our next best hope (which is what we are currently banking on) is that research that is currently being done will come up with a replacement Factor H therapy that would allow Hyde to have this treatment for the rest of his life and then do a kidney transplant only. A brand new potential is the drug Soliris that is currently NOT FDA approved for AHUS but several kids have had absolutely amazing responses to this - including Bryan Hearn who is from Lawrenceville and whose family is helping with this year's hike. Again - for Hyde this would entail the experimental drug along with a kidney transplant - so we continue to work for more research and information on our options.
So - that being said - the only thing we feel like we can do (other than keeping Hyde stable and happy) is to help raise funds for research that might prove invaluable for him in the future. We are working now on a fundraiser ourselves with family and friends in the spring - but there is a Foundation for Children with Atypical HUS that is an IRS approved non-profit that another parent started years ago. They work very closely with the dr's that did our genetic testing and also give out grants based on research applications into either improved testing or replacement therapies.
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