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In 2007, there was nowhere to go. A brief search on the internet brought back fear and pain. For many years, The Physicians’ Guide to Rare Diseases was the primary source of information to families searching for answers.  Every geneticist reiterated the same message: your child won’t make it. But now we have the truth. […]

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And then there were 4!

April 10, 2013 by

Back a few months, I signed up some additional help with the by adding Ross Lennox. To this day, his existence continues to be irreplaceable to all of us in ways that nobody will ever notice. I can’t thank him enough for all that he has done to keep the site live, up to […]

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And then there were 2

December 4, 2012 by

Hey everyone! I have been meaning to talk about the progression of this web site and the community over the past 3 months but haven’t found the time to spread the news. I am excited to announce that Ross Lennox, father of Mia is “officially” an integral part of Over the past year, […]

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