Well, it looks like my definition of "tomorrow" and yours is probably different, but here is the news you've all been waiting for. About 3-4 weeks ago, Belinda posted about Piper's condition on a website where you can post questions and Dr's will read and provide input/answers to your questions. So after Belinda posts a question about Piper, she is contacted by a doctor at Stanford University who is researching mitochondrial diseases (including Leigh's.) One thing leads to another and it turns out he is leading a trial for a new drug that is showing some promise helping children with Piper's condition. After talking with him some more, he tells us he want to include Piper in his study. Now from what we've been told, they had another, unofficial study with about 1/2 dozen patients that showed "remarkable" progress as they went through the study. This time around they are an official FDA approved study including about 3-5 children and Piper will be one of those. We are still working out the details, but hopefully in the next couple weeks Belinda and/or I will start taking weekly flights to Stanford to begin treatment. We're not getting our hopes up (at lest not a whole lot) but it is wonderful to at least have a way to fight back.
On a somewhat related note, without the tireless efforts of researchers like our Dr. at Stanford and Dr. Pascual (our specialist here in Dallas) these potentially life saving treatments would not be possible. If you want to be part of the team striving to find a cure, you can help by visiting www.childbrainfoundation.org, a non-profit organization run by Dr. Pascual and his wife Albertina helping to raise money for research.
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Belinda had mentioned something about this on TC. I am praying that this does SOMETHING, anything, that this will help Piper and STOP this horrid disease. My husband's cousin passed away in January a few weeks before her first birthday from Leigh's, its heart breaking... Please keep us updated.
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