Lincoln family shares story of son living with Down syndrome

Published: Sep. 30, 2020 at 7:12 AM CDT
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LINCOLN, Neb. (KOLN) - When October rolls around, many families remember that it’s also Down Syndrome Awareness Month. One Lincoln family 10/11 NOW’s Kamri Sylve spoke with says life with their son who has Down syndrome could not be better.

Each year, 37 babies in Nebraska are born with Down syndrome. Henry Sweeney was one of them.

Henry is now six years old and soaks up everything about being in first grade. He dances to music, plays sports with his dad and loves going through the car wash.

Before Henry was born, his mom, Mary, says she had no complications during her birth, and ultrasounds showed Henry was a healthy baby boy.

However, the day she gave birth, Sweeney’s doctor had some suspicions that Henry might have had trisomy 21, the most common type of Down syndrome. Someone with this type of Down syndrome has three copies of chromosome 21, unlike the usual two copies.

When doctors tested Henry and diagnosed him, it became a confusing time for this family.

Henry didn’t show any common markers like a sandal gap between his toes or the common almond-shaped eyes.

“It took a while for us to really accept that he had Down syndrome. We joked, kept waiting for it to go away, and of course, it didn’t. Every parent who finds out that their child has any sort of circumstance that they’re not expecting, there’s a grieving process that you go through,” said Mary Sweeney.

After Henry was born, the Sweeney family says they found comfort in receiving help and education from The Down Syndrome Association for Families of Nebraska. This family tells 10/11 for those who don’t have children with Down syndrome, it’s okay to ask questions and be curious, but always remember to be kind.

“Watching Henry come into my work and see how many people smile when he walks by, and how much love he can bring out to people by giving hugs to people he knows are sad, it’s been really great to see how good people can be rather than how bad people can be, which is nice,” said Luke Sweeney, Henry’s dad.

Henry is the big brother of two younger brothers, Jack and Charlie. His brothers have learned, even though they’re young, that Henry requires a little more patience and learns differently.

According to the CDC, Down syndrome remains the most common chromosomal condition diagnosed in the U.S. Each year, one in every 691 babies will be born with Down syndrome.

On Saturday, October 10, 2020 the Down Syndrome Association for Families of Nebraska will host its annual Step Up for Down Syndrome Walk. It’ll be in Lincoln at the Lancaster Event Center beginning at 9 a.m.

Because of the COVID-19 pandemic, you can either attend the walk in-person, while wearing masks, or tune-in virtually.

Sweeney says this annual walk is a great way for families with loved ones with Down syndrome to connect. For more information, visit HERE.

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