Group offers support for parents with Down syndrome children
SURFSIDE BEACH — Diane Glover and Courtney Fields are like any mothers of small children, they love to talk about their two-year-olds, MaryEllen and Koby.
The fact that both children have Down syndrome does nothing to dampen the obvious joy these women get from their toddlers, and it’s something they want to share.
Glover and Fields are founding members of the Grand Strand Down Syndrome Society, an organization founded in 2005 to offer support and fellowship for local parents of children with Down syndrome at any stage — prenatal, newborns and adulthood.
The society now has a membership of 49 families in Horry and Georgetown counties. Their goals include educating others about Down syndrome and helping to eradicate misconceptions and stereotypes about the condition.
“There are plenty of people out there who don’t understand what Down syndrome is or what these children are like,” Fields said. “In order for our children to have a fair shot in society, we need more people to understand.”
Down syndrome is a genetic abnormality. Those diagnosed with it have an extra copy of their 23rd chromosome.
According to information provided by the National Down Syndrome Society, one of every 733 live births in the U.S. is a child with Down Syndrome, with about 5,000 new births each year. More than 350,000 people in the United States currently have Down syndrome, and the condition affects people of all ages, races and ethnic backgrounds.
Glover, 39, is a mom of four who lives on Pawleys Island. Fields, 22, lives in Conway and Koby is her first child. The two women were looking for support in dealing with Down syndrome when they became friends in 2005.
The Down Syndrome Society is different than many similar groups because it offers opportunities for fun and socializing along with the support aspect, Glover said.
The families regularly get together for holiday parties, play groups, picnics and “Mom’s Night Out.” Members are planning a benefit golf tournament for Aug. 17-18 with a reception and dance to follow at Precious Blood of Christ Church on Pawleys Island.
Glover, a member of St. Mary Our Lady of Ransom Church in Georgetown, said the society’s work is important because an increasing number of expectant parents who receive a prenatal diagnosis of Down syndrome are being encouraged to terminate the pregnancy. There are estimates that close to 90 percent of pregnancies with the diagnosis are eventually terminated.
“Plenty of people don’t understand that there is an option — this is the option,” Glover said, pointing to her smiling daughter. “We are celebrating our children. These children are amazing people.”
One of their goals is to work with area medical professionals to make sure they have the latest, cutting-edge information on Down syndrome. In the future, the society hopes to sponsor lectures by prominent experts to doctors and parents.
Myrtle Beach resident Tammy Harrell is the mother of four children. Her youngest child, Avery Grace, 4, was born with Down syndrome. Harrell said she was 39 when Avery Grace was conceived, and knew that it was a possibility.
After undergoing amniocentesis and learning that the baby did have Down syndrome, her OB/GYN immediately gave her information about where and how to terminate the pregnancy.
“I was shocked — there was no further information given, no resources, just here you go — end the pregnancy,” Harrell said.
“Obviously this was not a choice for me. I am Catholic and against abortion … I feel the medical community is unprepared for this type of diagnosis, and it has been stereotyped for so long the answer is to give up on the baby.
“Our organization is here to enlighten the medical community as well as neighbors and friends that these children are a blessing from God,” Harrell said. “My daughter Avery is absolutely a gift … such a beautiful child. I will forever be grateful for being given the opportunity to love her and for her to love me.”
Another primary goal of the society is to put expectant parents of newly diagnosed children in touch with experienced parents. Society members will provide them welcome packets that include a hand-knit blanket, book and information.
One of the group’s long-term goals is to have its own building which would be a place for meetings and social gatherings for teens and adults with Down syndrome.
For more information visit the Grand Strand Down Syndrome Society.