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World Down Syndrome Day: Raising Awareness

In the US, about 1 in every 700 babies is born with Down syndrome.1 In honor of World Down Syndrome Day, Stacy and Paula share their stories about how Down syndrome has impacted their families.

Caleb as an infant

Stacy’s Story

“There are many different emotions a mother and father go through when their child is born with a disability, but the emotion that most often gets overlooked in the midst of tests and uncertainties is the simple beautiful joy of having a baby. Our son Caleb was born with Down syndrome a few months ago, and I did not wish to hide or ignore the diagnosis, but I found it difficult to celebrate as countless tests and pending results kept knocking at the door. Each time I looked at my baby boy, all I could see was a marvelous creation. He was not like any other baby—he was uniquely himself and he was altogether mine. Having a child with disabilities gives you a new cup by which to measure; a simple smile is no longer simple, it is a triumph and a glorious sight, and a common milestone on the doctor’s chart becomes the very corner stone of great hopes. We do not know how far our children will go, but we do know the depth of our love. I cherish my little boy each day and don’t waste the present worrying about the future.”

Keaton talking into a microphone

Paula’s Story

“After 7 long months of denial after Keaton was born, we submitted to a blood test, and it confirmed that our handsome little boy indeed had Trisomy 21. We were blessed with an amazing geneticist who encouraged me to raise my son in the same way I had his 3 older sisters, to expect great things. I remember asking “what do you think of my son?” and his reply was “he is a great little guy.” I countered with “no, I mean, what will he be able to do?” His reply to that was “he is the only one who will be able to show you that, he will be able to do anything any other kid can do, it will just take him a little longer.” 

“Keaton required surgery to repair club feet and open heart surgery to repair a heart defect, all before he was 2 years old. I can remember wondering at times if he would ever walk or talk. He is now 13 years old and keeps us all entertained with his dancing and singing. He sings the Star Spangled Banner every year for his school musical and anytime he receives an invitation, whether for a school board meeting or a high school volleyball game. He will tell you he is a “rock star.” He is happiest when he is making someone else happy by helping or serving.”

CDC would like to thank Stacy and Paula for sharing their families’ stories.

Down syndrome: What do we know?

Down syndrome is a condition in which a person has an extra chromosome. Chromosomes are small “packages” of genes in the body. They determine how a baby’s body forms and grows during pregnancy, and how the person’s body functions after birth. Typically, a person has 46 chromosomes. People with Down syndrome have an extra copy of one of these chromosomes, chromosome 21. This extra copy changes the body’s and brain’s development and can sometimes cause mental and physical problems for them. Down syndrome remains the most common chromosomal condition diagnosed in the U.S, affecting 1 in every 700 babies born in the U.S.1

Even though people with Down syndrome might have some physical and mental features in common, every person with Down syndrome is unique, and symptoms can range from mild to severe. People with Down syndrome often will benefit from special therapies that help to improve their physical and intellectual abilities. It is important to begin therapy services as early as possible.

Many people with Down syndrome lead productive lives well into adulthood. Many individuals with Down syndrome are able to hold jobs and live independently. However, it is important for people with Down syndrome to see a health care provider regularly throughout their lives.

Down syndrome: CDC’s Activities

CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) is learning more about Down syndrome by tracking the occurrence and conducting research.

  • Surveillance or disease tracking: Tracking the occurrence of Down syndrome gives us important clues for opportunities to improve outcomes and helps plan for the needs of families.
  • Research: To understand how Down syndrome impacts affected children and their families, CDC and its partners conduct studies on health services use, survival, and racial/ethnic disparities.

CDC and its partners continue to look at these issues to improve the lives of children and families affected by Down syndrome.

More Information

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  1. Parker SE, Mai CT, Canfield MA, Rickard R, Wang Y, Meyer RE, Anderson P, Mason CA, Collins JS, Kirby RS, and Correa A for the National Birth Defects Prevention Network. Updated National Birth Prevalence Estimates for Selected Birth Defects in the United States, 2004-2006. Birth Defects Res A Clin Mol Teratol. 2010;88(12):1008-16.