Since prenatally receiving Myles’ diagnosis, we have been fortunate to learn all sorts of information regarding Down syndrome and the individuals and families affected by this chromosomal abnormality. We wanted to share some of this information with you, our family and friends, to empower you to help make the world a more educated, tolerant, and accepting place for Myles and people like him. Most of this information is from the National Association for Down Syndrome (www.nads.org) and the National Down Syndrome Society (www.ndss.org).

What is Down syndrome? Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome, which is why it is often referred to as Trisomy 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

How common is Down syndrome? Down syndrome is the most commonly occurring chromosomal condition and occurs in one in every 800 live births. The incidence of births of children with Down syndrome increases with the age of the mother, but because of higher fertility rates, 80% of children with Down syndrome are born to mothers under the age of 35.

What does a person with Down syndrome look like? A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all. 

What medical conditions are associated with Down syndrome?  People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives. Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.

Are all people with Down syndrome delayed? All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses. People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.

I thought it was Down’s Syndrome, why do you keep writing Down syndrome? The preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. Additionally, it is written with a capital D and lowercase s.

How do I refer to a person with Down syndrome? Exactly like that, “baby/child/adult/individual with Down syndrome” rather than a “Down syndrome baby/child/adult/individual.” Using this ‘person first’ language emphasizes that although Down syndrome will always be a part of that individual, it does not define who he/she is. Avoid saying “Down’s child” or “baby with Down’s” or referring to the condition as “Down’s” rather than Down syndrome. Commonly accepted abbreviations for Down syndrome include DS and T21 for Trisomy 21.  In addition, people “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.

Whew! Thanks for reading to the end! We are becoming passionate about helping people understand what Down syndrome is and what it means for the families and individuals it touches. There are still many outdated perceptions of Down syndrome within the school setting, medical setting and general community, so we will spend our lifetimes as advocates for Myles. Thanks for your help in making the world a better place for him.