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I created this blog shortly after my oldest son was diagnosed with Fragile X Syndrome (FXS).  We had a later diagnosis than most do now days even though we were aware from the beginning I was a carrier of Fragile X Syndrome.  Over the course of the first three and a half years of my older son's life, I tried to find information online about infants and toddlers with Fragile X desperately seeking affirmation that my son was 'okay'.  Nothing was complete and so many things were incredibly inaccurate (though I didn't realize that at the time).  

When we finally did get our diagnosis, this blog became my way of getting real, accurate information to others that may be going through what I had and helping them along their journey, something I never had.   I continue to blog and follow our journey for the same reason, but also to give others hope.  To know that you can survive.  That you can do it.  To remember in your dark days that there is light and that most importantly - it will be okay.

Fragile X comes from my paternal grandmother which of means my father and sisters are carriers as well.  It has since been passed onto my oldest and youngest children.  Ayden (our oldest) was officially diagnosed at 3.5 years old in 2011.  By the time we had our diagnosis, my second son Issac was 18 months old and seemingly unaffected. He was tested and we received his negative results in March 2013. Still not feeling like our family was complete, we decided to have one more baby and our little girl Emmalina was born in February 2012.  She was tested at birth, and officially diagnosed with Fragile X Syndrome just one year after her oldest brother's diagnosis.

Life isn't always perfect for me; I certainly have my ups and downs as everyone else does.  Its in those down times that I have to remember to put one foot in front of the other and focus now.  I can't change the past, I certainly can't predict the future, but I can do my best each and every day to make the future the best I can for myself and kids.
Although time seems to fly, it never travels faster than one day at a time. Each day is a new opportunity to live your life to the fullest. In each waking day, you will find scores of blessings and opportunities for positive change. Do not let your TODAY be stolen by the unchangeable past or the indefinite future! Today is a new day! --Steve Maraboli

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  1. prof premraj pushpakaran writes --July 22 is National Fragile X Awareness Day!!!