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I have meet many boys with alexander's disease ,but i know of no other girls. My daughter , Hailey , is 8 and would like to meet another girl with the disease. She can still talk and is mentally like a 4 or 5 year old. She has the infantile type .
Hi Hailey's Mom! My 13 year old daughter was diagnosed with Alexanders Disease back in April. I don't know if it is considered juvenile or adult onset. I'm not even sure if the doctors know which onset it is.
I believe I've visited your daughters website on caring bridge. She's adorable!
Hello Hailey's mom. My name is Mandy and my 5 year old daughter also has been diagnosed with Alexander's disease. We had been told she had a leukodystrophy last April and just now got an official diagnosis. She had a developemental delay as well. She seems to do well physically (though at times she is a little wobbly) and mentally she is very smart but she has difficulty speaking. She was born with these delays and she has been receiving services (First Steps....physical therapy, speech therapy etc.) since she was about 20 months old. The doctor believes that she probably has the juvenile form. I hope this helps.
Mandy
Hailey has started puberty this year. she is only eight. doctors tell me this early puberty is normal for axd kids. she had a huge growth spurt and her legs are so long and now she walks with her legs bent and wants us to rub her legs and feet all day long. It is so strange.
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