Clouds, May 2010

Clouds, May 2010

Wednesday, June 1, 2011

on a side note...

If Fragile X Syndrome was part of routine pregnancy screening and I knew ahead of time that my unborn baby tested positive, at the very least it would have been a mental preparation for us. In addition to that, it would have been an opportunity to have Early Intervention services beginning at infancy. Also, this would have allowed us a chance to educate ourselves, on how to meet our child's special needs. 

(Early Intervention services are provided by the state for infants and toddlers up to three years of age, who need one or more various therapies. There are many different therapy areas that a child may qualify for-- following evaluations. Some examples include physical therapy, speech, or occupational therapy which is more sensory and fine-motor focused.)

The early knowledge of FXS, as I was saying during pregnancy for example, would also have been crucial for the rest of the family to know. Therefore they too could get tested. After all, FXS is a genetic condition and there will likely be other carriers.

However, taking a step back for a moment, if I knew about this prior to getting pregnant I would not have chosen to take our chances. A woman (one who has, or carries the FX gene) has a 50% chance of passing Fragile X Syndrome to her child. It's a roll of the dice I would not have wanted to gamble on. Therefore, we would have involved reproductive specialists who could test my eggs prior to them being fertilized. (To be blunt...)

I respect the decision of other parents who just want more kids and don't believe in having the assistance of modern medicine to avoid the gene being passed. 

That being said, I disagree with them with every single fiber of my being. 

The love, respect, and admiration that I have for Hayden is indescribable. He is my heart, my spirit, and my soul. And YES I believe in him. I am PROUD of him. But of course I wish he was not mentally impaired.

There is a reason there are doctors and scientists devoting their careers and their lives to finding treatments, and ultimately, a cure. I believe it's wrong to knowingly risk passing on a genetic disorder that will compromise anyone's life. 

This is my belief.

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