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Cutathon to benefit 2-year-old girl with rare condition

Event helps girl with rare condition

Posted: September 19, 2012 - 12:00am
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Haleigh Gay, 2, sitting with her mother Jennifer Gay, was born with a rare genetic condition and heart defect. She has had two open-heart surgeries and still weighs less than 15 pounds.   Photos by Jim Blaylock
Photos by Jim Blaylock
Haleigh Gay, 2, sitting with her mother Jennifer Gay, was born with a rare genetic condition and heart defect. She has had two open-heart surgeries and still weighs less than 15 pounds.

Less than a month ago, Haleigh Gay’s family celebrated her second birthday. Soon, they’ll have cause for more festivities.

The Martinez toddler, born with a rare genetic disorder that delays her development, is the focus of a “cutathon” Sunday at Trendz Salon and Hair Concepts Salon and Day Spa, both in Martinez.

Each salon will offer free haircuts and other services for donations of any amount. All money raised will be given to the Gay family.

Haleigh was born Aug. 30, 2010, with a heart defect. Five months later, doctors diagnosed Haleigh with Smith-Lemli-Opitz syndrome, which stops her body from producing cholesterol.

Haleigh was born with vision problems, webbed toes and an extra pinky finger, all caused by the syndrome.

At birth, Haleigh weighed 5 pounds. The 2-year-old now weighs 14 pounds, 11 ounces.

“When she was first born, she could fit in my husband’s hand,” said Haleigh’s mother, Jennifer Gay.

Haleigh’s condition is so rare that there are only 20,000 reported cases in the United States, Gay said.

In order for a baby to contract the syndrome, both parents must have the mutated gene and then there was only a 20 percent chance that the illness would be passed on to Haleigh, Gay said.

Haleigh has been in and out of the Medical College of Georgia Children’s Medial Center since she was born.

Because of her heart condition, Haleigh required open-heart surgery when she was just 6 days old.

By the time she was 3 months old, doctors had inserted a feeding tube into Haleigh’s stomach, removed her extra finger and performed a stomach procedure to quell acid reflux symptoms.

Haleigh’s second open-heart surgery came in March, and she’ll need at least one more.

Doctors typically wait until a baby is 6 to 8 months old or weighs 15 pounds. Haleigh weighed only 13 pounds before the surgery.

“She started turning blue and they didn’t have the option (of waiting),” Gay said. “They had to go ahead and do it.”

The Gays were given the scare of their lives when Haleigh almost died during surgery and again in recovery.

At one point, doctors told the couple to call their families because they didn’t know if Haleigh would make it.

After leaving the hospital, however, Haleigh continued to improve.

“We say she’s a very feisty little kid,” Gay said.

Her feeding tube has been removed, and while she’s not yet walking on her own, Haleigh is able to crawl and pull herself up.

“She’ll hold onto something and cruise,” Gay said.

So far, the only word Haleigh says is “mama,” but Gay said she and her husband, Jason, take everything one day at a time.

Gay stays at home with Haleigh, while her husband works for Sig Cox Heating and Air. It was through Jason Gay’s co-worker that Trendz Salon owner Robyn Kelley heard Haleigh’s story.

This will be the fifth time Kelley has organized a cutathon fundraiser for a family with a sick or disabled child. The most recent event raised $12,000.

“We just feel like this is what we’re supposed to do,” Kelley said.

In addition to haircuts, free spray tans will be given at Trendz. At Hair Concepts, chair massages also will be offered.

Activities for families and children will be going on from 10 a.m. until 6
p.m. at both locations. Gifts and prizes will be raffled off.

Full event details can be found on the “Hope for Haleigh” Facebook page.

Through organizing the event, Kelley said she’s gotten to know Haleigh and her parents.

“Wherever she goes, she lights up a room,” she said.

Gay said she’s overwhelmed with the community outpouring of support.

“It blows me away that there are so many people that care for somebody else that they’ve never met,” she said “I get very teary-eyed.”

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