OREM — Most people have never heard of Fragile X syndrome.
But Rachael Gibson and her husband, Marc, know.
All three of their children have Fragile X syndrome, and Rachael as well as her two sisters are carriers of the genetically transmitted condition. Their daughters face a 50/50 chance of passing on the syndrome.
They live with the stress, the behavioral problems, and the exhaustion of trying to keep up with the physical and emotional needs and the uncertain future.
But despite the challenges, the Gibsons are upbeat and determined to work through the years as a successful family.
"There are families out there going through the same thing but don't know what this is," Rachael Gibson said. "They just need to find each other and spread the word about Fragile X."
The upcoming Parade of Pumpkins event is one way they are trying to keep positive and share with others what they're learning about coping. A community event, the Parade of Pumpkins is designed to raise awareness of Fragile X syndrome.
According to the National Fragile X Foundation, Fragile X is the world's leading cause of mental impairedness and a leading cause of autism.
Fragile X refers to a genetic mutation that affects the X chromosome. It's most commonly found in males.
More than 1 million people in America have been diagnosed with Fragile X, according to the National Fragile X Foundation website statistics. Symptoms range from mild autism to severe learning and behavioral problems.
"It's a very broad spectrum disorder," Gibson said. "There's no cure but there are medications that help significantly."
According to the National Fragile X Foundation, Fragile X syndrome "is caused by a 'full mutation' of the FMR1 Gene," which doesn't produce sufficient amounts of a protein required by the body's cells for proper functioning and development. There's a blood test that can definitively diagnose the condition and medications that can help.
"It's actually very common," Gibson said. "I had no idea when we went into this (after she noticed developmental delays in her son). My cousin had read an article about it. I've since become a genetics expert."
Children with Fragile X tend to act out, experience learning difficulties and resist direction. In males, "behavioral characteristics can include ADD, ADHD, autism and autistic behaviors, social anxiety, hand-biting and/or flapping, poor eye contact, sensory disorders and increased risk for aggression," according to the National Fragile X Foundation. Such characteristics can also be seen in females, "though females often have milder intellectual disability and a milder presentation of the syndrome’s behavioral and physical features."
The Gibsons' son, Brighton, and daughters Avery and Joslin all have Fragile X but unique challenges.
Brighton struggles to eat. The texture of most foods and a poor appetite make it tough to eat at all, much less swallow and keep it down.
"We know how important it is for our skinny little ... boy to get the nutrition he needs even when texture defensiveness and poor appetite push him the other way," said his mother.
Avery has medications she should take three times a day to help her function in day-to-day life. The youngest child was on oxygen 24/7 as an infant.
The Parade of Pumpkins event will feature carved pumpkins, haunted Halloween gingerbread houses and holiday items on display, Oct. 18-19.
Master pumpkin carver and photographer Aaron Reimschiissel, who carves for the American Giant Pumpkin Growers Association and who is also Gibson's brother, will do a live carving demonstration.
More than 100 creatively carved and decorated pumpkins will be on display and offered for sale. The proceeds will go toward helping families with Fragile X syndrome.
Admission is free, and face-painting, games, food, entertainment and family activities are scheduled, along with the opportunity to learn about Fragile X syndrome.
"We are hoping to raise money from selling the pumpkins to send families to the national conference to learn more about the syndrome," Gibson said.
For more information, see the national foundation website
If you go:
What: Parade of Pumpkins
Where: Old Pleasant Grove Rec Center, 65 E. 200 South, Pleasant Grove
When: Oct. 18 from 5-9 p.m. and Oct. 19 from 10 a.m. to 9 p.m.
Sharon Haddock is a professional writer with more than 35 years experience, 17 at the Deseret News. Her personal blog is at sharonhaddock.blogspot.com.
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