My Nonprofit Reviews

My son who is now almost 25 was diagnosed with AHC at age 6.5. He also has a life threatening seizure disorder. It was a long process of seeing Dr. after Dr. and it had never even been heard of where I live. This foundation was very helpful in supporting us with useful information that helped both us and our Drs. It was great having someone you could talk too and they understood what you were going thru as they were also having similar experiences with their child.My son has been very stable since 1998 and hasn't had a major seizure since then. His episodes of paralysis are infrequent and totally unpredictable. He still walks but his balance is getting increasingly worse and he has very little stamina so uses a wheelchair for walks and outings. Communication is a major problem for him but he has come a long way. He is happy, has a great sense of humor. Please support this organization. We really need this research to help our children.