Monday, July 18, 2011

Fragile what?

Fragile X Syndrome. Ever heard of it? Would you know what it was if you didn't know us? Like most people up until October of 2007 we had never heard of it either. Today is National Fragile X awareness day. Feel free to share this blog.

fragile X syndrome (FXS), the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities. FXS is the most common known cause of autism or "autistic-like" behaviors. Symptoms also can include characteristic physical and behavioral features and delays in speech and language development.

fragile X-associated tremor/ataxia syndrome (FXTAS), a condition which affects balance, tremor and memory in some older male and female gene carriers.

fragile X-associated primary ovarian insufficiency (FXPOI), a problem with ovarian function which can lead to infertility and early menopause in some female gene carriers.

Some gene carriers do not exhibit any of these features. To learn more about carriers click here.

Fragile X can be passed on in a family by individuals who have no apparent signs of this genetic condition. In some families a number of family members appear to be affected, whereas in other families a newly diagnosed individual may be the first family member to exhibit symptoms.

There are several things they are researching now that carriers may be more susceptible too. Such as Autoimmune disorders and Fibromyalgia.

Fragile X has changed our lives in so many ways.

Fragile X has made us stronger and better than I think we ever would have been without it.

Fragile X has made me a more loving and patient mommy than I ever thought I could be.

Fragile X makes us never take any accomplishment for granted. Stacking blocks is huge! Answering a question is a major big deal in our house. Dialing 911 (even when its inappropriate) is awesome. Peeing on the potty....amazing. Saying "momma" is still breathtaking to me. I will NEVER get tired of hearing it. Saying "I love you too"....still makes me cry.

Fragile X brought out Mike's inner advocate. It has taken him to the steps of the capitol and meetings that have now gotten us a Fragile X clinic in Texas.

Fragile X has taken us places we never would have been with people we never would have known. It will take us to Miami next summer.

Fragile X has made me a more compassionate friend.

Fragile X makes me admire and stand in awe of my little boy who struggles to accomplish the milestones that most take for granted.

Fragile X will always be a part of our lives and we will never quit praying and hoping for a cure.

Will my little boy with Fragile X syndrome ever graduate high school, drive a car, go to college or get married?....Fragile X makes me hope beyond all hope and dream beyond all dreams.

Tell someone about Fragile X syndrome today. In honor of Hayden and our family and so many others just like us that will never give up or quit dreaming the impossible.