World Down Syndrome Day on March 21 is a global awareness day, which has been observed nationally since 2012.
On this day, advocates across the world speak up in support of people living with Down syndrome, according to the Word Down Syndrome Day website. The website promotes the right for people living with Down syndrome to a quality education, to good health care, to work and make their own money, and to make decisions about their own lives.
Katie Maples is a local resident whose three-year-old son has Down syndrome. When she was 13 weeks pregnant her doctor asked her if she wanted to have genetic testing done since she was 34 years old, and at age 35 pregnancies are considered to be ‘geriatric.’ Maples had the test done and the results came back as suspicious of Down syndrome. Maples then had to do further testing to determine if these results were accurate.
“Mothers can carry the Down syndrome gene in their blood but the baby not actually have Down syndrome,” Maples said. “And there are types that are parroted and types that are completely random. The type that John Marshal had was completely random.”
Down syndrome is a genetic condition in which a person is born with 47 chromosomes rather than the usual 46. People with this extra chromosome will have some level of learning disabilities but they have their own likes and dislikes and their own personalities.
Some babies with Down syndrome have heart defects, which wasn’t the case for John Marshal, however, he did have a duodenal web which is a stomach blockage that Maples said he had to have repaired when he was two days old.
For 30 days, John Marshal stayed at the Neonatal Intensive Care Unit before the family could go home. Three years later, John Marshal is learning to walk.
“In the state of Alabama they offer what they call early intervention for a child that is three years old,” Maples said. “They offer therapy services for free in their home, but it only happens about one time a month.”
Maples said she used it early on, but that John Marshal goes to a private practice now where he goes two days a week for physical therapy, occupational therapy and speech therapy. She said overall John Marshal is doing very well.
On March 1, Marshal and Tripp Hollands from Back 40 partnered together for their second annual Honor Bash which benefits Down Syndrome Alabama. The event includes a 5K, bouncy houses, face painting and an ice cream truck.
“There were so many people who showed up,” Maples said. “I think at one point there were about 200 people.”
Last year the event raised about $14,000, according to Maples. However, this year, she said they are on track to raise $25,000 to $30,000.
The proceeds will go to Down Syndrome Alabama to help families who are less fortunate than others. Maples said she is such an advocate for Down Syndrome Alabama because she has the ability to provide for her son and get him the extra care he needs, but not all families are able to.
Currently, there are seven Down syndrome organizations in Alabama, according to the Global Down Syndrome Foundation, with the closest one being in Birmingham.
