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Parent Emeritus
Wiskott-Aldrich Syndrom
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<blockquote data-quote="DazedandConfused" data-source="post: 229280" data-attributes="member: 831"><p>I'm so very sorry. It's devastating to have to face such a grave diagnoses with a little one.</p><p> </p><p>I read a bit on it. Seems there is a very good chance of long term survival if a bone marrow match is located. Of course, that has it own risks (Host vs. Graft Disease). In the meantime, he will require vigilant medical care.</p><p> </p><p>Please excuse my straight forwardness, I'm a Mom of a Leukemia survivor. There was no internet like there is today and I can remember scouring for information on treatments and survival rates. I went to the public library and used the hospital's medical library. I was helpless otherwise. I couldn't tolerate being at the mercy of doctors and wanted to have a comprehensive understanding of what my child faced. </p><p> </p><p>Sending hope and positive thoughts to you and your family.</p><p> </p><p>(((hugs)))</p></blockquote><p></p>
[QUOTE="DazedandConfused, post: 229280, member: 831"] I'm so very sorry. It's devastating to have to face such a grave diagnoses with a little one. I read a bit on it. Seems there is a very good chance of long term survival if a bone marrow match is located. Of course, that has it own risks (Host vs. Graft Disease). In the meantime, he will require vigilant medical care. Please excuse my straight forwardness, I'm a Mom of a Leukemia survivor. There was no internet like there is today and I can remember scouring for information on treatments and survival rates. I went to the public library and used the hospital's medical library. I was helpless otherwise. I couldn't tolerate being at the mercy of doctors and wanted to have a comprehensive understanding of what my child faced. Sending hope and positive thoughts to you and your family. (((hugs))) [/QUOTE]
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