Much has changed since I last used this blog. For starters, Brody is no longer here with us, which is a sad and sobering reality that I struggle with hourly.
In addition, much of the original information regarding diagnosis is inaccurate, as Brody was misdiagnosed at the time I was writing these updates. In January of 2011 he was properly diagnosed with a rare and complex immune disorder. HLH, was, in fact a secondary response to his underlying illness. Anything that was written in summer and fall of 2010 about possible genetic links has since been debunked. The National Institutes of Health has been studying Brody's genetic makeup looking for clues, but, to date, there are no known genetic markers for Brody's illness. Hopefully, someday, they'll unlock the door to this mystery so that other families wont suffer our same fate.
We are planning a big charitable golf event and fundraiser benefiting Doernbecher Children's Hospital. Please help us honor our beautiful son Brody by supporting the children of our community who suffer from rare and complex medical issues.
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Here you'll be able to follow Brody on his journey back to health. A place where we can come together to love and support this amazing little boy, who at two years of age, has endured more than many of us have in our much longer lifetimes.
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