Fragile X Troubled One Family, Strengthened Another

Had it not been for the apparent double murder-suicide committed by pro wrestler Chris Benoit last weekend, many may never have heard about Fragile X syndrome.

Now reports are surfacing that the challenges Benoit and his wife faced in dealing with their young son's genetic disorder may have played a part in driving him over the edge.

Though not widely known or understood, Fragile X syndrome is actually the most common genetic form of mental retardation, and it is considered the leading known cause of autism.

And while the syndrome may have been part of what caused the tragic end of the Benoit family, for one other family living in Atlanta, the syndrome has actually pulled them closer together.

Gail Heyman's struggle with Fragile X began when she learned that her second son, Scott, would never live a normal life because of the syndrome.

"One of the challenges is letting go of a dream that each parent has: That when they have a child, that child is going to progress normally," she said. "That's a hard thing to do. You want to think that you can fix the problem."

But though she could not fix the problem, she and her family learned to cope with it.

"My husband and I both decided to learn what we could about Fragile X and use what we learned to help others," she said. Her devotion to learning more about the syndrome would lead to her becoming co-founder and president of the Fragile X Association of Georgia.

Even Carly, Scott's younger sister who is untouched by the syndrome but still a carrier, pitched in at the age of 16 by writing a book titled "My eXtra Special Brother," which is based on her relationship with Scott.

Today, Scott -- now 26 -- lives independently and holds down a job in the produce section of Publix.

Coincidentally, he is also a huge fan of pro wrestling -- and he was a fan of Chris Benoit in particular.

"He has WWE posters all over his home," Heyman said. "And he loves [Benoit]... He will be saddened by the news. But I think he will deal with it.

"On one hand it is horrible, it is such a tragedy. But if something good can come from something this bad, let's use it to help people understand Fragile X."

What Is Fragile X?

According to genetic counselor Shelley Dills of the Emory University School of Medicine, Fragile X syndrome is a genetic condition that affects 1 in 4,000 males. It is only about half as common in females.

While fathers cannot pass the syndrome on to their sons, mothers who are carriers may pass severe forms of Fragile X to both male and female children. This is because the syndrome is caused by a mutation in a specific gene on the X chromosome known as Fragile X Mental Retardation 1, or FMR1.

Genes provide blueprints for the body, giving instructions on how to build each part of a cell. In people with Fragile X, sections of a blueprint become duplicated to the point that the instructions don't make sense anymore.

The cell can no longer decipher the instructions and hides them in the interest of safety. With no instructions to follow, the final product, a protein called Fragile X Mental Retardation Protein, or FMRP, cannot be made.

Without this protein, nerve cells in the brain cannot communicate with each other, resulting in the symptoms that accompany Fragile X syndrome.

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