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Last Updated: 10/31/2017
 

Article of Interest - Fragile X Syndrome

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One Day in the Storm of Life
Sally Nantais, October 2, 2005, The News-Herald
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I seldom focus on the negative but when life happens itís not always positive.

It was August 30, the first day of school for the girls, a time of celebration. We started preparing for this day two weeks ahead of time. I thought the morning would be smooth as silk but then the FX (Fragile X) fairy visited during the night.

Austin awoke and greeted me with a mess. All the extra attention I wanted to give to the girls had to be directed towards Austin and the clean up.

Mom had to keep all of her emotions in check and put on a happy face, after all, thatís what mothers do.

I made it through the drive and our special pictures were taken with big smiles all around. I almost made it out of the school before my tears started but Peggy, a staff member, stopped to thank me for something and the dam broke. At least the girls didnít see it, because the last thing I wanted to do was to ruin their special day. The hugs I received from Peggy helped turn my day around.

Grief never truly ends and the heartache is always there, just beneath the surface. I only wish I had a choice as to when and where itís going to take over my life.

I recognized that it was time to start self-therapy and began by looking for a little humor to lighten my load. That was easy, considering how bad the day started out it couldnít get much worse.

Austin's room was cleaned and the girls had a terrific first day at school. Thanks to Dad, we ended the day with a back to school celebration dinner at a local restaurant the kids enjoy.

It's strange how the important things in our lives are always highlighted.

Throughout the day, I witnessed on TV the havoc and devastation left behind by hurricane Katrina. I worried about the families that didn't have the means to evacuate, especially those who might have had children or loved ones with special needs.

In retrospect, my morning might have felt like a hurricane went through but I was grateful that I still had a roof over my head, running water, electricity and those basic needs we often take for granted.

Before, during and after hurricane Katrina, I watched Jim Cantore, from the Weather Channel, reporting from within the stormís fury. Iíve always admired Jim because he is a father of two children with FX. He is a constant reminder that for many of us, FX is our biggest hurricane. In the end, I hope both Jim and I will ride the FX storm out together, at least in spirit, right to the cure.

The FX hurricane is growing.

It was previously estimated that one in 250 to 259 women are carriers of fragile X syndrome. In July 2005, the American Academy of Family Physicians reported that one in 200, maybe as high as one in 100, women are carriers.

Yet, many doctors are still advising parents that itís not necessary to test for FX.

Those same doctors have no idea how Fragile X-associated Tremor/Ataxia Syndrome (FXTAS) and Premature Ovarian Failure (POF) are affecting the parents, grandparents, aunts and uncles of the children.

Those doctors are rendering special intervention programs inoperable. To me, this would be like not calling in FEMA after a hurricane or placing an individual in a FEMA leadership position who has no crisis management experience.

Why? Why would anyone listen to someone who knows so little on the subject?

With compassion, I recognize that we all have our own storms to endure. Iím hoping youíre doing whatever you can to make a difference and get through.

If you can afford to give, and you havenít done so, please think about giving to the numerous reputable organizations supporting the victims of Katrina. Somewhere out there, there is a little boy or girl, just like yours or mine, with nothing to go home to.

With admiration, I applaud the residents (many from the Downriver area) and owners of Viningís Trailer Park, Munith, Michigan, who participated in an end of the season block party raising $6,000 for the victims of Katrina. Together we made a difference.

If you want to learn more about my hurricane, go to www.FRAXA.org, the FRAXA Research Foundation or FragileX.org, the National Fragile X Foundation. And in case you didnít know, October 5 is National Fragile X Research Day.

     

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