i just read an email from the AHC (Alternating Hemilplegia of Childhood) list. It was from a parent i had met when the MIT was first diagnosed. At the time, the daughter was an active pre-teen. She was having a few episodes, doing ok in school, was in special classes for most subjects, and had red hair and glasses. i was scared of her. i saw the way she walked, and it wasn't a "normal" walk. i heard the way she spoke and it wasn't a "normal" speach. Other than that, she was fine.
Over the years, i have read about her progress, but nothing warned me about the email i just read. She is now having the stopping breathing episodes. She is having more and more days where she can't move. She needs to be fed more often then she can feed herself. None of this was ever commented on before. The family can't find a group home for her, since she stops breathing so often. They are looking into a nursing home for her. She is now 25.
The MIT shows this behaviour now. The stopping breathing. More and more episodes where He needs constant care. If this is where He is now, and she has progressed to where He already is, how much longer? How much longer before He gets worse and worse? How much worse can He get? How much longer will He be with me?
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