Mom's Romeoville Benefit to Raise Awareness for Little-Known Disorder

Most people have never heard of Fragile X syndrome.

But Missy Zolecki discovered she was a carrier for the genetic disorder before she even became a mother.

In 1997, Zolecki learned a relative’s child had been diagnosed with the syndrome, which causes autistic-like behaviors, along with speech, motor and cognitive delays.

Tests confirmed Zolecki was a carrier for the syndrome, a mental impairment caused by a mutated X chromosome that appears fragile or disjointed under a microscope. 

Despite medical intervention aimed at lowering the risk of having children with the disorder, Zolecki and her husband received news shortly after son Matt's birth that he was postive for Fragile X syndrome. 

“We got called when he was 12 days old and told that he did in fact have it,” said Zolecki, a Plainfield resident. The diagnosis spurred the couple to work to educate others about the disorder.

“We obviously were meant to do good things," she said.

In fact, the family will host an Aug. 10 golf outing at in . The outing will help fund a Dec. 1 educational conference on Fragile X.

“It’s a spectrum disorder, very similar to autism,” Zolecki said, adding the disorder is the only known genetic link to autism, although not all children with Fragile X have autism or related disorders.

“The big difference is kids with Fragile X crave social interaction,” Zolecki said.

Matt, now 11, is big brother to Paige, 9, and Jack, 6, who do not have Fragile X.

Though he currently attends school in Bartlett, Zolecki said she hopes Matt will eventually be able to return to Plainfield schools.

“Full inclusion is the ideal” for most children with Fragile X, she said.

While carriers of Fragile X do not have the cognitive impairments characteristic of the syndrome, they are at risk for certain health problems.

“As a carrier, I am at risk for disorders that my son is not,” Zolecki said. Female carriers can develop Fragile X-associated primary ovarian insufficiency (FXPOI), which can cause infertility and premature menopause.

Fragile X-associated tremor/ataxia syndrome (FXTAS), which typically affects male carriers of Fragile X, is a neurodenerative disorder.

“It’s kind of a cross beween Parkinson’s and dementia,” said Zolecki, who has dedicated herself to educating people about Fragile X.

“I want people to hear of Fragile X and know that it is a family of disorders,” she , saying she believes parents of autistic children, couples having trouble becoming pregnant, women experiencing early menopause and those with a family history of Parkinson’s disease should be tested to see if they are Fragile X carriers.

“ …  Once a family has a child diagnosed with Fragile X and they look back in the family, they have an explanation for why Mom went into menopause in her 20s or 30s and why Grandpa has ‘Parkinson’s’ that isn't responding to treatment," she said.

Zolecki said plans are in the works for a Dec. 1 conference on Fragile X, to be held at . 

The Aug. 10 Fragile X Charity Golf Outing at Mistwood Golf Course in Romeoville will help fund the conference, Zolecki said.

The event will include a four-person scramble, lunch and awards reception. Check in begins at 12:30 p.m., followed by a shotgun start at 2 p.m.

Non-golfers can choose to attend the dinner reception only, scheduled for 6:45 p.m.

Guests can register online at www.fragilexgolf.com. Registration fees are $120 for individual golfer or $440 per foursome. Dinner-only registration is $20 per child and $35 per adult.

Zolecki said Matt and his siblings plan to be at the family friendly event, which she hopes will be even more successful than the 2011 golf outing.

“It was a tremendous event,” she said. “Last year we made $15,000 … Now I’ve had to set my bar a little higher.”