Fragile X Awareness Day 2013

I've been living with Fragile X my entire life, but only been aware of it for about half of that time.  Even with 16 years of knowledge, I've only been intimately aware of exactly what Fragile X is since March 6, 2011. Some studies indicate a prevalence of as low as 1 in 150 women are carriers of Fragile X.  It can go undetected for so long, until the day arrives that your young child finally receives an answer for their developmental...

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A Day at the Park Fundraiser: The Scoop

You probably heard about our fundraiser happening this Sunday... named "A Day at the Park", it is the first Fragile X Awareness fundraiser event in mid-Michigan. For those coming to this blog for the first time...  Mr Awesome and I have three children - our oldest son Ayden has a dual diagnosis of Fragile X Syndrome and Autism, while our youngest daughter Emmalina also has Fragile X Syndrome.  Our middle son, Issac is not affected...

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Post STX209 Update

I've sat down to write this update so many times and then walked away, unable to put words down.  We are living day to day and taking each hurdle as it comes - looking at the big picture of changes is really difficult for me still.  All my time and energy have been thrown into readjusting to what has become our new normal.We began weaning off arbaclofen and started adding racemic baclofen on June 9.  We have been off arbaclofen since June 23 and on our current dose of baclofen since June 16.  Current medication...

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National Fragile X Awareness Month

July marks the beginning of National Fragile X Awareness Month.  Each year on my blog I've attempted to do something to raise awareness during the month on this blog.  This year, I've realized that I haven't come up with anything special and part of that is because I've been raising awareness a lot the past few months from Advocacy Day and writing letters to members of congress to helping found the STX209stories website.  It...

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