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Hi Anne,

Thank you for taking the time to write such a beautiful, insight comment. I’ll admit it is hard to write about the new treatments that might have helped my daughter and especially the success stories. But like a mother who donates her child’s organs so that someone else can benefit, I’m donating my daughter’s experiences in the hope that others may learn form them, and possibly, turn away from this horrible disease. That’s why I started writing about her a year ago, but as you say, then it was under another name.

After the seventeen years of my daughter’s suffering and death, I’ve come to the point where privacy seems underrated. Initially, I wanted people to know who she really was as a person: a witty, intelligent young woman who accomplished so much in spite of this debilitating disease. So if she could not extricate herself from this disease with her intelligence and all the help her family tried to give her, this is a disease that girls and women should stay far, far, away from.

Sorry this is all in one paragraph, but the posting system wouldn't let me seperate them. Second paragraph starts at, After the seventeen...

Sincerely,

Mary

January 3, 2010 - 9:49am

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