“They’re people like everybody else,” said David Guy, whose 16-year-old daughter Devin has Down syndrome.
Children with Down syndrome often require intensive therapy and support to achieve their potential, but they need a helping hand, not pity, said Chris Phillips, whose 17-month-old son John Robert has Down syndrome.
“He is who he is, and we wouldn’t change it,” said Chris Phillips. “We treat him like a normal kid. We don’t let people feel sorry for him.”
Down syndrome is one of the most common chromosomal disorders, affecting 1 in 733 children.
Extra genetic material – three copies of the 21st chromosome instead of two – is the source of Down syndrome. Exactly what causes the appearance of the extra chromosome isn’t clear. But the extra genetic material results in a number of developmental delays and health problems. Those with Down syndrome are at risk for congenital heart defects, respiratory and hearing problems, as well as Alzheimer’s disease, childhood leukemia and thyroid conditions.
“It’s so overwhelming,” said Renea Simmerman, a member of the Northeast Mississippi Down Syndrome Society, which organizes the annual Buddy Walk at Saltillo City Park.
The society hosts support group meetings for families, activities for the children and serves as an advocacy network. Much of the money from fundraisers like the Buddy Walk goes to providing information packets to parents of newly diagnosed children.
“As a new parent, I just wanted to talk to somebody,” said Simmerman, who got involved with the newly formed organization after her son Trevor was diagnosed.
There have been great strides in helping children with Down syndrome develop to their fullest. Advances in medicine mean the common health problems can be managed. Average life expectancy is around 60, according to the National Down Syndrome Society.
Early intervention services help the children maximize their physical and intellectual development, making it more likely they will be able to live as independently as possible.
The Phillips family of Oxford has learned to take hurdles in stride and celebrate every milestone with 17-month-old John Robert. These days, they are bursting with pride over babbling and crawling.
“It’s opened our eyes to not take anything for granted,” said mom Rachel Phillips, who left a teaching career to be able to care for her son. “Some days are tough, but we know John Robert is going to be OK.”
John Robert was born a month early, weighing five pounds. He was diagnosed with Down syndrome in the first days of his life. Weeks later, he was diagnosed as profoundly deaf, which is uncommon for Down syndrome children.
“Only 15 percent of Downs children have nerve deafness,” Rachel Phillips said.
John Robert started therapy when he was a month old and he continues to have a full slate of physical, occupational and speech therapy every week. It’s making a big difference.
In addition to the therapy, John Robert gets “Mimi” time with his grandmother Karen Namorato, who retired from her teaching job to help her daughter.
“The interventions make the difference,” Namorato said.
Because of the deafness, John Robert wasn’t expected to speak. But he’s continued babbling, and his family has high hopes a cochlear implant will help him gain the ability to speak.
It’s been helpful to lean on Northeast Mississippi Down Syndrome Society and other families dealing with Down syndrome in Oxford.
“It’s nice to know they’ve been through it at some point,” Rachel Phillips said.
Because of the disabilities, children with Down syndrome are eligible for services through Medicaid. Because of the intensive therapy needed for children with Down syndrome, that coverage is vital even if the family has private insurance, Rachel Phillips said.
“When you have a special needs child you have to be a strong advocate,” Rachel Phillips said. “We are always fighting for something he needs.”
Just because Devin Guy has Down syndrome, it doesn’t mean she doesn’t have a lot in common with other teenage girls.
“She’s very independent and strong-willed,” her mom Lori Guy said.
Devin loves hanging with friends. She likes movies. She has a hobby – photography – and is excited about the 4-H photography club at Saltillo High School.
When Devin goes to the mall, her mom can count on a chorus of “There’s Devin” and “Hi, Devin.”
Like her teenage peers, she gets territorial if her dad tries to go into her room.
“She likes her privacy,” David Guy said.
Devin takes a mix of special education and some mainstream classes, and she’s on track to graduate with a certificate with the Saltillo High School class of 2015.
Because of the intellectual disability that comes with Down syndrome, academically Devin works at an upper elementary level in many subjects.
She’s not as worldly as most 16-year-old girls. Instead of “Twilight,” she’s more interested in “Lion King 2.” She likes playing “Three Musketeers” and sword fighting with her younger brother William.
But that hasn’t stopped her from actively engaging with her classmates.
“I am sweet,” Devin said.
A group of students at Saltillo High School have formed Team Devin – complete with their own matching awareness bracelets – to raise money for the Buddy Walk. The Junior Civitans at Guntown School, where Devin attended last year, are also fielding a team.
“Everybody accepts her for who she is,” said Devin’s dad, David Guy.
When Devin was born with Down syndrome 16 years ago, there wasn’t a Northeast Mississippi Down Syndrome Society.
“The hardest part is not knowing where to turn,” Lori Guy said.
The Guys consider themselves lucky in that they were gently steered to other families dealing with Down syndrome.
Through those personal connections and a health team, they were able to get Devin intensive speech, physical and occupational therapy through North Mississippi Regional Center in Oxford and the McDougal Center in Tupelo. As she’s grown, Devin had great teachers in Tupelo and Lee County schools.
“Everywhere she goes, people have wrapped around her,” David Guy said.
Devin has been fairly healthy. Doctors watched her heart closely as an infant, but she never required surgery. And like most kids with Downs, she’s had multiple sets of ear tubes to fight persistent ear infections.
The Northeast Mississippi Down Syndrome Society has been helpful to the Guy family, connecting them to other families and giving Devin a chance to make friends like her.
They hope Devin’s achievements will help give other families with young children with Downs hope that their children can have full, active lives.
“We’ve gone through lots of hurdles,” David Guy said. “She lets the kids see what older kids with Downs are capable of.”
Eventually her parents expect Devin will be able to live on her own with minimal assistance.
“She wants to have a job when she grows up,” Lori Guy said. “We’re not going to limit her. There’s all kinds of options.”
■ When: Oct. 2
■ Where: Saltillo City Park
■ Benefits: Northeast Mississippi Down Syndrome Society
■ More info: www.nemdss.org or (662) 869-3211
• 8:30 a.m. 5K run – $20.
Electronic chip timing provided by Tupelo Running Club. Registration begins at 7:30 a.m. Admission to Buddy Walk festivities and T-shirt included.
• 10 a.m. – Walk ceremony at park followed by children’s activities including inflatables,
face painting, train rides, silent auction, mascots. Registration is $12 and includes lunch and T-shirt.