Friday, September 28, 2012

Grandmother walks to raise money for Down Syndrome research

Boca Raton grandmother walking 1,000 miles, the distance between her house and her granddaughter in Baltimore

She cried when she first heard about it, but the extra chromosome in her fourth grandchild's DNA put Kathy Coughlin on a fast track to a place that she hadn't fathomed.
She stayed at her newborn granddaughter's bedside as she endured multiple open-heart surgeries, a feeding tube insertion and other surgeries that are often part of Down Syndrome diagnosis.
Now, looking to raise money for the Down Syndrome cause, Coughlin is doing the most symbolic thing she can think of: walking 1,000 miles, the distance separating her from her son's family in Baltimore. Every day, for four hours, Coughlin walks around her neighborhood, measuring her miles as if she's heading toward their home.
Beside raising money, she's also celebrating the way her family has rallied around 4-year-old Amara with every step.
"She's taught me so much and she can barely talk," said Coughlin, 62, a human resources consultant. "She's been through so much, but she has a spirit and a tenacity ... she can be as happy as a typical person, in a different way."
A little more than 80 days ago, Coughlin started her journey with the goal of raising $2,000 to be split between the Gold Coast Down Syndrome Organization in Palm Beach County and the National Down Syndrome Society. She's now about 10 days away.
She said she's hoping the money goes toward supporting the medical needs of these children who often have low muscle tone, heart defects, digestive issues and delayed learning and research into the best ways to help them achieve their potential.
Each year, about 6,000 U.S. babies are born with Down Syndrome, or about one of every 691 babies born in the United States, every year, according to the Centers for Disease Control and Prevention. That number might drop as new, noninvasive testing allows parents-to-be to find out even sooner than before if the fetus in utero has the syndrome.
Coughlin said her son, then 32, and her daughter-in-law had one week to decide if they were going to carry their daughter to term. The doctors were telling the parents-to-be that tests were showing that she also had a hole in her heart.
She said she had no answer when her son asked her what she would do.
"They were going to take the weekend to think about it," she recalled. "I told him 'Whatever you decide, I'll support you.'"
He called Monday morning.
"He said, 'You can't pick and choose what God sends you,'" she said. "The two of us cried together."
Coughlin shut her business down temporarily for different stretches so she could be with Amara along with each medical hurdle. Born at 6 pounds, Amara, at first, lost weight as digestive problems made swallowing an ounce of milk an hourlong ordeal.
Around her third birthday, the family started to understand the full strength of the joy behind those slightly slanted brown eyes. Now, Amara loves books, music and singing "Happy Birthday" whenever the mood strikes — which is often, her grandmother says.
Thoughts of how she's going to support herself as an independent adult concern Coughlin. But she's looking forward to when they all get together for the Buddy Walk of Boca Raton's Gold Coast Down Syndrome Organization in October — the day before Amara's fifth birthday.
"I've been training to do this all of my life," her grandmother says, striding along her neighborhood's path.

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