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Photo by Tayhlor Sims
Cooper having fun at home with his mom, Katie.
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Photo by Tayhlor Sims
Cooper and his big personality awaiting his intestinal surgery at nine months old. This photo was featured by the Down Syndrome Association of Greater St. Louis for their 21 Days of World Down Syndrome Day last year.
Cooper Scott Curry was born on June 9, 2012, to Katie and Scott Curry of Godfrey, who instantly fell in love with their first-born son.
Worry set in when just a few hours after he was born, Katie noticed the shape of his eyes and feared that their son might have Down syndrome. When a doctor came in the next morning to check on her, and confirmed her worries with his own, worry turned to anger for their newborn, she wrote in her personal blog, http://keepingupwiththecoop.wordpress.com.
The couple had opted out of prenatal testing to diagnose problems in utero because they planned to continue the pregnancy no matter what, had no family history of Down syndrome, and because Katie’s chances of having a baby with Down syndrome at age 25 were around 1 in 1,200 to 1,300.
“We were devastated. I was very angry for Cooper,” Katie said. “I didn't want this for my baby. I felt like he was given this awful disadvantage in his life before it even started. The future was supposed to be exciting, but ours was suddenly very scary.”
A few common physical traits associated with Down syndrome include low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. However, each person is unique and may display these traits to different degrees, according to the National Down Syndrome Society.
People with this genetic condition have an extra chromosome, which causes cognitive delays ranging from mild to severe. Some people with Down syndrome grow up to drive, work and live on their own.
“There's no way to tell how ‘high-functioning’ Cooper will be or what he will be able to do independently. We just have to give him the tools he needs and wait and see,” Katie said.
Health conditions and disorders such as heart defects, vision problems, hearing loss, infections, hypothyroidism, blood disorders, spinal issues, sleep disorders, gum disease and dental problems, epilepsy, digestive problems, celiac disease, mental health and emotional problems sometimes are associated with Down syndrome, according to the Eunice Kennedy Shriver National Institute of Child Health and Human Development.
Already, in his short life, Cooper has been through a lot health-wise.
At only 17 days old, he underwent a surgery to fix a blockage in his intestines called a duodenal web. At 9 months old, he was diagnosed with Hirschsprung's disease, which means that some parts of his intestines lacked the nerve cells needed to move food along his digestive tract, and had to undergo another surgery to remove part of his intestines that didn't have those cells, his mother explained.
“He had an increased risk of developing both of those intestinal issues because of the Down syndrome. He also had a 50 percent chance of having heart problems, but we are thrilled that his heart is normal,” she said. “We are really lucky to have a lot of support from our family and friends, and I've learned that sometimes being strong is your only choice, plain and simple.”
Cooper has been in physical, occupational, and developmental therapy since he was a couple of months old, and just started speech therapy.
Despite all these things, Cooper has captured the hearts of friends and family with his big personality.
“He loves attention! He's sassy and stubborn, sweet and affectionate. He has more facial expressions than most adults. He loves ice cream and ‘Mickey Mouse Clubhouse,’ and he waves like a member of the Royal Family. He wins over new fans everywhere we go,” Katie said.
He even landed a feature photo for Day 17 of the Down Syndrome Association of Greater St. Louis’ 21 Days of World Down Syndrome Day in 2013, at only 9 months old. This year, Friday, March 21, marked the ninth anniversary of World Down Syndrome Day, a day in which Down Syndrome International encourages people all over the world to choose their own activities and events to help raise awareness of Down syndrome.
From a parenting perspective, Katie says that like any other parents, their job is about loving Cooper and doing their best. While his milestones always will take a little more effort, she’s looking on the bright side.
“That means that we get to really appreciate each step in his development. We are so proud when he learns something new because he works so hard to do it,” she said. “He crawls all over the place, most of the time with his legs straight and his little bottom up in the air. He is taking steps while holding onto the furniture, but walking is still a little while away. He says a few words and knows a few signs. He understands a lot and will follow commands when he's in the mood to.”
These days, the Currys are involved with the Riverbend Down Syndrome Association, a not-for-profit, all-volunteer group that provides support and information to parents of children with Down syndrome in Southwestern Illinois.
“We've met some great people and Cooper has benefited by receiving a scholarship from them for the Water Babies swim class at Lewis and Clark Community College,” Katie said.
“Being Cooper's mom can be challenging, but it is so much fun. We wouldn't trade him for the world.”
To follow Cooper’s ongoing story, visit Katie Curry’s personal blog at http://keepingupwiththecoop.wordpress.com.
To learn more about World Down Syndrome Day, visit http://www.worlddownsyndromeday.org/.