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Politics Causing a Welcome Stir for Down Syndrome Group Since Sarah Palin Came on the Scene, Calls Are Up.

September 23, 2008

By SHAKAYA ANDRES

Sarah Palin’s fast rise on the national political scene has created a stir as voters race to learn more about the GOP vice presidential nominee, but one local organization is playing catch- up for a special reason.

The Down Syndrome Association of Jacksonville reports an influx of calls from people wanting to learn more about Down syndrome, attributing the jump to news reports that the Alaska governor’s son Trig was born with the genetic condition in April.

“We’re embracing the exposure rather than a candidate,” said Debbie Revels, executive director of the Down Syndrome Association of Jacksonville. “The advocacy of someone running for public office will sure enough promote public awareness.”

In fact, the sixth annual Buddy Walk to promote public awareness and raise funds to support the local nonprofit couldn’t have come at a better time, Revels said. Organizers of the Oct. 18 event at the Jacksonville Beach SeaWalk Pavilion hope to raise $100,000 to help with programs such as individualized computer instruction, computer classes, speech therapy, educational speakers and many more.

“It so happens that this is the political year and the Buddy Walk,” Revels said. “We’re celebrating their lives.”

While the challenges of having a child with Down syndrome began more recently for Palin, longtime Mandarin resident Theresa Abood, 52, has been on the front lines of the issue for years.

When she was pregnant with her daughter Claire, a sonogram revealed that the girl, now 10, would be born with hydrocephalus, the buildup of too much cerebrospinal fluid in the brain. Then, three weeks after she was born, she was diagnosed with Down syndrome, in which an extra chromosome causes problems with the way the body and brain develop.

“I didn’t know what Down syndrome was,” Abood said. “I remember thinking it was one more challenge we’d be facing.”

Down syndrome is the most common cause of birth defects, with one out of every 800 babies born having the condition. Any woman can give birth to a child with Down syndrome; however, the risks are greater for those 35 years or older.

Abood said plugging herself into the Down Syndrome Association of Jacksonville helped tremendously. It provided information, resources and networking with other families going through a similar situation.

“From the time [Claire] was born, we would meet to share ideas, and speakers would come in to talk about the things [Claire] would face,” she said.

“Education is key,” said Gary Soud, a 30-year pediatrician who added that most people don’t know much about Down syndrome, which is why it’s critical that people get all the facts.

“Most mothers react positively; for mothers who are surprised, as the baby grows the more they are gratified,” he said. “They’re very rewarding children to raise because they tend to be happy, easygoing, just fun children.”

Claire likes swimming, biking, Matchbox cars, dolls, her kitchen, school and violin lessons, and she attends a church religious education program, Abood said.

“It’s just like raising a typical child,” she said. “Having Claire helped me to see some things I had inside of me that I didn’t know I possessed.”For more information on Buddy Walk 2008, visit www.dsaj.org or call 353-6300.DOWN SYNDROME SYMPTOMSDown Syndrome symptoms vary from person to person and can range from mild to severe. Common physical signs include:- Decreased muscle tone at birth- Excessive skin at the nape of the neck- Flattened nose- Separated sutures (joints between the bones of the skull)- Single crease in the palm of the hand- Small ears – Small mouthSource: Medline PlusDOWN SYNDROME MEDICAL CONDITIONS- Birth defects involving the heart such as an atrial septal defect or ventricular septal defect- Eye problems such as cataracts- Gastrointestinal blockages such as esophageal atresia and duodenal atresia- Hearing problems- Hip dislocation- Sleep apnea- Underactive thyroid (hypothyroidism)Source: Medline Plus”

(c) 2008 Florida Times Union. Provided by ProQuest LLC. All rights Reserved.




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