Clouds, May 2010

Clouds, May 2010

Wednesday, July 15, 2015

one good thing

I recently watched an Oscar winning film (from 2014) about a woman with Alzheimer's. On the surface this has absolutely nothing to do with fragile x. But anyway in the movie the woman who is a mother of three, learns that the type of Alzheimer's she has is rare & it is genetic.

Her character is a professor & there is a scene when she is on her way to a lecture at the University when one of her daughter's calls her. Here is a recap of the conversation:

"Hi Mom."
"Are you okay?" the mom asks.
"I got the results. I'm positive," the daughter says, very matter-of-fact.

The daughter was tested to learn whether or not she is a carrier of the same gene her mom has. She also tells her mom that the brother's test was negative & the younger sister did not want to know. There is an earlier scene with the neurologist when the viewer learns it's a 50/50 chance of the gene being passed on to the 3 children. Then the mom asks the doctor if it was passed, what are the chances they will develop the disease? And the neurologist answers that unfortunately it would be 100%.

So fast-forward back to the scene with the phone conversation, & as the mom is trying to digest what her daughter just told her, she asks how she is feeling. A side storyline is that the daughter & her husband have been trying to conceive. 

"I'm okay," the daughter says. "One good thing, at least I found out now before the next IUI session. I guess there's a way they can test the embryos so they can be sure the babies will be okay."

In real life I personally had no idea that my child was at risk for having a genetic disorder passed on to him/her... or that I was the one who had a 50/50 chance of passing it on. And since Hayden is a boy-- I didn't know that either when we were expecting-- but since he is, the chance that he would be affected is 100%. This is because males only have one x chromosome.

If I had known ahead of time, I would have felt the same way as the daughter in the movie. Except we didn't know. This is only one of a million reasons why I am determined to continue to raise awareneXs for fragile x.

From a medical standpoint-- & truthfully political, too-- this is crucial to demonstrate the need for research funding. From an educational standpoint the awareness is vital for establishing both appropriate learning & work environments, to help individuals be successful.

And from a social standpoint awareness helps reveal understanding, & ultimately, acceptance.

So if this were my movie, my character might say...

"One good thing, at least we know now. And there is a way we can be sure our loved ones will be okay." 

July is Fragile X Awareness Month & July 22nd is National Fragile X Awareness Day-- it is an official date as recognized by the United States Congress.

All month long, members of the fragile x community are helping to spread awareness. Go here for more information

And next Wednesday on July 22nd, please wear green to show your support. We are also participating in the annual NFXF fundraiser-- as part of the NJ Fragile X Community Support Group's team-- & you can visit Hayden's page here:

Thank you
Let's make a positive difference with our knowledge.


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