The Brandon News
Down Syndrome Support Growing
D’Ann Lawrence White, Tribune photo
Alexandra Torok began attending the Brandon Down Syndrome Support Group when her son, Max, was just a month old. “I didn’t know anything about Down Syndrome and wanted to find out everything I could,” said Torok. Max is now 5 months old and Torok offers advice to new mothers of children with Down Syndrome.
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Published: February 20, 2008
Updated: 02/18/2008 08:11 pm
BRANDON - With all the worries that go along with pregnancy, having a child with Down syndrome wasn't on Alexandra Torok's radar.
No one in her family had Down syndrome and, because she was younger than 35, she had no reason to undergo amniocentesis to find out whether her baby had genetic abnormalities. Generally, the older the mother, the higher the risk that the baby will be born with the chromosomal disorder.
"I'd never been around anyone with Down syndrome in my life," the Brandon woman said.
She had given birth to a healthy girl, Farah, now 3 1/2 , and there was nothing to indicate her next baby wouldn't be healthy.
"It was a shock when they walked in and told me that they suspected my baby had Down syndrome," said Torok, recalling Max's birth at Brandon Regional Hospital five months ago. Further testing confirmed the doctors' suspicions. Down syndrome occurs in one out of every 733 live births. More than 350,000 people in the United States have this genetic condition.
"Your first reaction is to get depressed, but there's really nothing to be depressed about. It's not going to help the situation," Torok said. "So I decided to take some more positive steps. Right away, I went online and started investigating, learning everything I could about Down syndrome."
What began as an impersonal search for information on the Internet led Torok to a support system of fellow parents in her own back yard.
Through the National Down Syndrome Society, Torok hooked up with the FRIENDS-Support, a Down syndrome family support group. FRIENDS is an acronym for Friends Raising, Inspiring, Educating and Nurturing Down Syndrome. The group meets from 7 to 9 p.m. the first Friday of each month at the Brandon Community Center, 502 E. Sadie St.
For Torok and other new parents with thousands of questions about Down syndrome, their children's medical problems, resources available and developmental and behavioral concerns, just talking to another parent who has experienced the same situation is a tremendous relief, said Pam Arnoldson of Lithia, president and co-founder of FRIENDS.
Arnoldson said she was in much the same situation as Torok when her third child, Joseph, was born four years ago.
However, she was living in Virginia at the time.
"As soon as Joseph was diagnosed with Down syndrome, a geneticist visited me, and a nurse came in with an information packet containing all sorts of resources for children with Down syndrome, because it's important to get children therapy right away."
Theresa Mastella of Lithia had a different experience when Anthony, 4, who was born in a local hospital.
"They gave us the news very scientifically, and you're hit with so many emotions at the time, you don't even know what questions to ask," Mastella said.
"A lot of moms who have amniocentesis know their child has Down syndrome before they give birth and can get used to the idea and educate themselves. But we didn't know beforehand, and no one told us that there was a federal program for ages 0 to 3," she said, referring to the state Department of Health's Bay Area Early Steps Program for infants and toddlers with special needs. "We had to hunt that information down."
Mastella and Arnoldson shared their concerns after meeting at the Family Support & Resource Center in Brandon, a nonprofit center offering free support services for families.
"There aren't a lot of support systems for families of children with Down syndrome," Mastella said. "And our children have so many medical needs. We knew it would be helpful if we had a way to share what therapies were available and what doctors were treating kids with Down."
A small group of parents started meeting in 2004. By fall 2005, the group, with 50 families on its rolls, had obtained its nonprofit status and was attracting parents from as far away as New Tampa. The group meets monthly to hear speakers, discuss concerns and socialize.
Its members are preparing to launch an outreach and major fundraiser.
With the help of a $10,000 grant from the Children's Board of Hillsborough County, FRIENDS is preparing 300 packets to hand out to parents of children born with Down syndrome at five local hospitals and obstetrical offices, with essential information parents need about services available. The packets also will reassure parents they aren't alone, Arnoldson said.
"I think every parent goes through a grieving process at first, until you realize what joy these kids add to your life," Mastella said. "They might not be ready for a cheerleader to come into their hospital rooms, but we want them to have the information available when they are ready."
"It's been huge, really huge," Mike Homan of Riverview said of his involvement with FRIENDS. He and his wife, Jen, joined the group when their son, David, now 2 1/2 , was 6 months old.
"That first year, we didn't know what we were doing, and I learned everything from the other mothers," said Jen Homan. "We were in a fog. I didn't even know about early intervention. And when I would talk to moms with normal kids, they just didn't get it."
Ultimately, the group hopes to open a center to provide support and educational resources to families with children who have Down syndrome. Members realize that will take more than a $300 grant. So they began brainstorming, searching for ideas for fundraisers. The best suggestion came from Arnoldson's two oldest children, Teresa, 12, and Jorge, 11.
Each year, the National Down Syndrome Society hosts a Buddy Walk in cities throughout the United States to raise money for research and education. The Tampa Bay Buddy Walk will be held Oct. 11 in Largo this year.
"We're not large enough to host our own Buddy Walk, and we wouldn't want to take away from the Tampa Bay walk," Arnoldson said.
But the Arnoldson kids, who love to travel, suggested one night at dinner that the group plan a Buddy Cruise.
Lithia neighbor and cruise specialist Sherry Leybovich of Cruise Planners was more than willing to work with the group to plan the three-night trip to the Bahamas aboard the Royal Caribbean cruise ship Oct. 17-20. The ship will leave Port Canaveral, travel to Nassau and then head to the private island of Coco Cay, where families can swim with the dolphins.
"It's an awareness event, as well as a chance for families who have children with Down syndrome to get away and have some fun," said Arnoldson, noting that October is Down Syndrome National Awareness Month.
Among the guest speakers on the cruise will be Sujeet Desai, a 26-year-old musician with Down syndrome. He and his wife, Carrie, have been featured on "The Oprah Winfrey Show" and "20/20" and in The Wall Street Journal and Time magazine.
Also joining the cruise will be Sesame Street writer and activist for special-needs children Emily Perl Kingsley. Her experiences with her son, Jason, who has Down syndrome, inspired her to include people with disabilities in the Sesame Street cast, for which she earned 17 Emmy awards and 13 nominations.
Valrico resident Nikole Whitehead, co-founder of the Statewide Advocacy Network on Disabilities, an organization dedicated to assisting parents navigating the special education system, also will speak to parents on the cruise. Whitehead has spoken at conferences across Florida and is a past board member of the National Council of Parent Attorneys and Advocates.
While parents attend conferences, children can participate in ocean adventure camps, such as scavenger hunts, karaoke nights, talent shows, science experiments and rock-wall climbing.
In addition to filling all 200 cabins it has reserved, FRIENDS is seeking corporate sponsors to provide cash donations, as well as items for goodie bags to be given out during the trip. Sponsors will have their logos on the group's Web site, banners and T-shirts.
For information about the cruise, call Leybovich at (888) 464-1827. For information about FRIENDS, call Arnoldson at (813) 651-0541 or Mastella at (813) 657-0844 or visit www.friends-support.org.
Reporter D'Ann Lawrence White can be reached at (813) 657-4524 or dlwhite@tampatrib.com.
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