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Review for Alternating Hemiplegia of Childhood Foundation Inc, Southfield, MI, USA

Rating: 5 stars  

As a parent of a 23 yr old son with AHC, I fully understand the tremendous void this organization has filled, and continues to fill, in assisting families through emotional support, awareness of medical advances, ideas relating to solutions for day to day problems on such things as adaptive technologies, how to work with school systems on preparing a useful IEP, navigating the bureaucratic nightmare of medicaid, etc. They work to coordinate medical efforts to find a cure (or keep abreast of potential avenues of research) by working with multi-disciplinary doctors. Being such an extremely rare disorder that receives little attention from researchers, they provide some hope in organizing efforts that can hopefully provide some relief to the afflicted individuals and their families. I have been involved with this organization from its inception and know that they perform a vast array of services that may seem minor but are critical to maintain some degree of sanity and realism to the families. Sometimes just venting is needed, other times they will help hook up individuals with another family that is going through similar issues. With low cognitive skills and often extreme retardation, explaining what is happening to the AHC kid having, for example, a terrifying first experience with menstruation, can lead to feelings of inadequacy, loneliness, and depression. The family conferences that I've attended are always uplifting. Sometimes just reassuring new parents that they can make it through has a profound effect on their outlook. When your average family doctor or pediatric neurologist knows less than the man on the moon about AHC, it is a great relief to get assistance on where to find more information about this disorder. Being able to call and get a cheerful, understanding, and non-judgemental person to help explain what the future may hold or what medicines have seemed to be helpful is a great relief. Before this organization arose, it was not unusual to go through doctor after doctor claiming it's epilepsy (as in the early years with my son) and having him doped up on phenobarbitol despite no evidence of epilepsy on any EEGs. We need all the help we can get. This disorder is unlikely to have a day, week, or month named after it to promote awareness; Bono, any remaining Beatles, or Springsteen are not going to do a televised fundraiser for AHC. Living with it is a lonely ordeal that would be brutal without such an organization. I could go on now I hope you get the point on how important this organization is to a group of kids who are marginalized just because they are few in number, and therefore unlikely to bring fame and fortune to researchers, drug companies, etc.

Role:  Client Served