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Alexander's Disease

mason5852
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My husband and I just found out today that our five year old daughter "officially" has Alexander's Disease. She has been diagnosed with a Leukodystrophy since 2008 and has had several blood tests done to see what she could possibly have. Now we know and I am at a loss and don't know what to do as I cannot bear the thought of life without my little girl. Is there anyone out there who is in the Indianapolis area or around there? Does anyone know of any support groups aside from this one that I could go to? I would appreciate any help.

Mandy

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Leukodystrophy

1 reply

rhess3

mandy , My heart goes out to you. My 8 yr.old daughter was diagnosed at age 6. It has been very difficult to live with the diagnosis, but now at least we know. We live 4 hours from you in IL. Please contact me if you have any questions that I may be able to answer. Hailey is still talking and walking and eating. She goes to school and loves to play with her baby brother. Never give up hope!!!
dawnknecht@hotmail.com
www.caringbridge.org/visit/haileyknecht

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