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World Down Syndrome Day: Raising Awareness

In the United States, about 1 in every 700 babies is born with Down syndrome. In honor of World Down Syndrome Day, read Stacy's hopeful story about her son Caleb who has Down syndrome.

Stacy’s Story

Caleb as an infant

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. 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.


CDC would like to thank Stacy for sharing her family's story.


Down syndrome: What do we know?

What is Down syndrome?

Down syndrome is a condition in which a person has an extra copy of chromosome 21. 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. This extra copy of chromosome 21 changes how the baby’s body and brain develop, which can cause both mental and physical challenges for people with Down syndrome.

How common is it?

Down syndrome remains the most common chromosomal condition diagnosed in the United States. Each year, about 6,000 babies born in the United States have Down syndrome. This means that Down syndrome occurs in about 1 out of every 700 babies.1

How does Down syndrome affect people?

Even though people with Down syndrome might act and look similar to one another, each person is unique and has different abilities. People with Down syndrome usually have an IQ (a measure of intelligence) in the mildly-to-moderately low range and are slower to speak than other children. Services early in life will often help babies and children with Down syndrome to improve their physical and intellectual abilities and develop to their full potential. Many people with Down syndrome lead productive and fulfilling lives well into adulthood. They can have jobs and live independently. However, it is important for people with Down syndrome to be involved in their community, take good care of themselves, and see a healthcare provider regularly. Families of people with Down syndrome often can help their loved ones by connecting with other families that have had children with Down syndrome. This may help families gain insight into overcoming potential differences in caring for their child with Down syndrome.

Down syndrome: CDC’s Activities

CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) works with partners to increase information about Down syndrome through tracking and research and to improve the lives of people with Down syndrome and their families.

  • Tracking: Tracking where and when individuals with Down syndrome are born and where they are living gives us important clues about opportunities to improve outcomes and help plan for services for affected families.
  • Research: To understand how Down syndrome impacts affected children and their families, CDC and its partners conduct studies on health service use, survival, and other conditions that people with Down syndrome might have (e.g., autism or Alzheimer’s disease).
  • Improving the lives of individuals with Down syndrome: CDC provided funding to develop Brighter Tomorrows, an initiative to educate healthcare providers on how to counsel families receiving a diagnosis of Down syndrome. Additionally, CDC worked with partners to develop “Your Baby and Down Syndrome,” a brochure of valuable information for healthcare providers to provide to new parents.

More Information

  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.
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