October is National Down Syndrome Awareness Month. For local residents who don’t already know, the Lowcountry Down Syndrome Society was created in 2006 as a support group for families in the coastal region.
Richmond Hill residents Mickey and Betsy Collins and their 4-year-old daughter Janie, and Mike and Cindy Varner and their and 15-year-old daughter Danae Shores, are members of the group.
John and Candy Bogardus, of Rincon, along with the help of a couple other interested families, began the group last March.
"We have a daughter, Lainey, who will be three next month. When we found out that she had Downs, we went looking for a group or anything else we could find, and there was nothing local. So we looked into starting something for families such as ourselves, to help provide support and information," Candy Bogardus said.
The group meets every fourth Tuesday of the month, switching locations between Port Wentworth and Memorial Health. There is usually a featured guest speaker and social time for families to meet and interact with one another, with children encouraged to attend.
Cindy Varner, originally from South Carolina, has been here since May. She said before her family moved to Richmond Hill, her daughter Danae had a variety of special needs groups she was involved with.
"I have been talking to anybody and everybody to try to get answers for something for Danae to do. The Lowcountry Down Syndrome Society is the only thing I’ve found," Varner said.
For the Collins family, the group has been helpful for them in being able to talk to other families and hear about their issues. Betsy Collins said one big concern last year came up when everyone was starting to lose Medicaid, and the group helped come up with ways to keep the coverage.
Collins said her daughter has already had heart surgery, a gastrostomy tube to assist with feeding, and surgery for severe reflux.
"All those surgeries added up…And then you have therapies – a lot of insurance doesn’t cover all the therapies they need – like speech therapy, physical therapy, and occupational therapy," Collins said.
But the society provides encouragement, and important networking, for those types of issues.
"It’s great to have the support; seeing the other kids and getting them all together and watching them interact; and talking to the other parents, finding out what speech therapist someone might recommend, things like that," Collins said.
The group is also working to help new parents of children with Down syndrome.
"When Janie was first born, in the hospital they say, ‘your child has Down syndrome.’ And that’s it. They don’t really give you any information," Collins said.
"One thing we’re doing is the new parent packets. We’re going to distribute them to OB/GYNs in the area, and put the information out there, so it’s available."
The Lowcountry Down Syndrome Society is also working for a one-day clinic.
Collins explained there are already two, in Emory and Jacksonville, where people can bring their children to be tested for everything from developmental issues to thyroid tests to hearing tests. The group is trying to get Emory to come do one here annually, to help offset those medical costs.
The Lowcountry Down Syndrome Society is also part of the National Down Syndrome Society. Last year, when the group found out about the National Buddy Walk Festival, they decided it was something they wanted to have for the coastal region.
Now in its second year, the local Buddy Walk helps raise funds for the society, to help support education, research, and advocacy programs, and to help raise awareness and provide assistance in Bryan and surrounding counties.
In addition to corporate sponsors and donations, those interested in participating in the Buddy Walk can pay $12 per person/$40 max per family to walk, which includes lunch and Buddy Walk tshirts.
Collins said they raised over $80,000 last year – a completely overwhelming and unexpected amount, she said.
"Last year was huge. There were thousands of people at the Walk," Mickey Collins said. "I don’t know how many of our friends came, and every family that came brought a huge group of people with them."
The 2007 one-mile Buddy Walk will take place in downtown Savannah, at Forsyth Park on Oct. 6. There will be rides, food, games, and music for the whole family. Registration begins at 8:30 a.m., with pre-registration encouraged, and the walk will commence at 10:30 a.m., with festivities continuing until 2 p.m.
All children, young adults and adults with Down syndrome, family members, friends, healthcare professionals, corporate teams and members of the community are encouraged to attend – even wagons, strollers and pets are welcomed.
For more information about the group and their meetings, and/or the Buddy Walk, call John or Candy Bogardus at 728-8505 or 663-8573 or visit www.LDSSGA.org.