Blue and Yellow Ribbons: Down Syndrome Awareness Month

One in 775 babies are born in the United States with Trisomy 21, better known as Down syndrome. That’s roughly 6,000 babies a year, and four million people worldwide. Every October, the whole world takes a step back to raise awareness for Down syndrome and educate everyone on the condition.

What is Down Syndrome?

Down syndrome is when an individual has an extra copy of the 21st chromosome. The cause of an extra chromosome is still unknown, but there are some risk factors that can up the chances of a child being born with Down syndrome, including if the maternal age is over 35 and genetics. 

There are three types of Down syndrome: Trisomy 21, Translocation Down syndrome, and Mosaic Down syndrome. The difference between each lies in the cell division process and how the 21st chromosome is copied. 

Trisomy 21 accounts for about 95% of cases, where every cell has an extra third copy of chromosome 21. Translocation occurs in about 3–4% of cases when extra genetic material from chromosome 21 attaches to another chromosome. Mosaic is found in about 2% of cases, meaning only some cells contain the extra chromosome while others have the typical pair. Out of the three types, Trisomy 21 is the most common.

Who Discovered Down Syndrome?

Down syndrome was first recorded by John Langdon Down in 1866. Down would name the condition Mongolism, which would eventually be renamed to Down syndrome. However, Down’s only described the physical traits and facial features of Down syndrome.

It wouldn’t be until 1959 that the cause (the extra chromosome 21) would be discovered by geneticist Jérôme Lejeune. Despite Lejeune’s contribution, Mongolism would be renamed to Down syndrome after Down. In the early 1970s, Down syndrome would become the standard name throughout the world.

Famous People With Down Syndrome

The most famous person with Down syndrome is Princess Alexandrine Irene of Prussia (1915-1980). Alexandrine was a member of the House of Hohenzollern and was in the public eye her whole life. Her family, unlike many at the time, didn’t hide her from the world and because of that she became one of the most notable people to face social stigmas surrounding developmental disabilities. 

The richest person with Down syndrome is John Cronin, co-founder of Johns Crazy Socks, a multi-million dollar online store. Cronin’s business has generated millions in revenue since its establishment in 2016. Cronin worked with his father to build his company after struggling to find a traditional job. He became the first person with Down syndrome to win an Ernst & Young Entrepreneur of the Year Award, and was named to the Forbes 30 Under 30 list.

How To Be Respectful

When addressing someone with Down syndrome, there’s some important things to keep in mind. Down syndrome is not a disease or birth defect as some people believe; it’s a syndrome or condition. It’s important to avoid stigmatizing language like “suffering from” or “afflicted by” when referring to someone with Down syndrome. 

Additionally, the term Down syndrome can be shortened to D.S., but shouldn’t be shortened to Down’s because it creates a connotation that the man who discovered Down syndrome—John Langdon Down)—owns the person with Down syndrome. 

As seen throughout this article, always put the person before the condition. It’s never “a Down syndrome child” but instead “a child with Down syndrome,” because the person is more important than the condition. 

And above all, do your research and be willing to learn. You can find more on the proper ways to talk about Down syndrome here. 

Personal Testimonies

Now that we know more about Down syndrome, let’s look to someone who’s around it 24/7. Jennifer Williams, mother to JJ May, a child with Down’s syndrome. When asked about life with JJ, Williams had this to say:

“Babies born with Down syndrome are just that, babies. They need love and care just like any other baby would. That doesn't change as they grow; they still need love, support, and belonging as any other neurotypical person. 

“There is more involvement in terms of medical and therapies needed than neurotypical peers, and maintaining equal balance between when to be a therapist, advocate, and parent is critical. However, special needs or not, kids are more alike than different. 

“Totally biased here, but I think I won the golden ticket with my son. Maybe... he'll be 13 in a couple of months and my new favorite sounds are stomping up steps and slamming doors. The attitude is real and pray for me that I make it through this phase of his life. The smell of his shoes and armpits make my eyes water, and boys are well... smelly little humans. These things may make you chuckle but they are true (ask any parent that raised a teenager) but also common grounds regardless of diagnosis. See more children, special needs or not, are more alike then different. 

“When meeting anyone with Down syndrome, talk with them and be patient with them when they try to answer. A lot of people with Down syndrome have low muscle tone and that affects speech (try stuffing your mouth with as many marshmallows as you can and try and talk clearly, it is like that for them) and cognitive decline making thinking of responses a little longer. 

“But still ask them questions, get to know them, what their interests and likes/dislikes are, and just be friends, invite and include them. Good old fashion kindness goes a long way. As October is Down syndrome awareness month, show kindness, wear blue and yellow ribbon, and don't forget on March 21 (World Down Syndrome Day) wear those crazy, mix-matched socks!”

Tara Hintz, mother to Emma Sage Hintz, a child with Down syndrome, also responded to the question of what is life like with a child with Down syndrome.

“When Emma Sage was little, I wrote that Down syndrome is simply ‘a variation of humanity.’ 20 years later, I believe those words more deeply than ever. Being Emma Sage’s mother has taught me that a diagnosis may describe one small part of a person, but it can never contain the enormity of a life.

“Her life is wonderfully ordinary and completely extraordinary, filled with family and friends, work she loves, Special Olympics bowling, laughter, determination, independence, challenges, accomplishments, and dreams still unfolding.

“I once thought my role would be to teach Emma Sage how to find her place in the world. Instead, she has spent 25 years quietly teaching me to see the world differently: to look beyond labels, to recognize possibility, to celebrate difference, and to understand that there are many ways to live a beautiful and meaningful life.

“Down syndrome is part of Emma Sage, but it is not the measure of her. She is. And what an exquisite human being she has grown to be.”

Emma Sage herself also wanted to speak on how she sees life with Down syndrome.

“I think having Down syndrome is cool. I don’t really think of it as a disability. It’s just part of who I am.

“I love my life. I love my family, my four dogs, and my friends. I love my job at the Flower Shop, bowling, going places, dancing, having fun, and doing the things I like to do.

“Sometimes I need help with things, but everybody needs help sometimes.

“I can do lots of things, and there are still lots of things I want to do.

“I wouldn’t want to be somebody else.

“I like being Emma.”

Down Syndrome Awareness Month

Every October, the month is full of events and fundraisers to help raise awareness for Down syndrome. But it’s not just during October that you can help. Find out how you can get involved in your community here.

As always, be kind and respectful of everyone, including those who are a part of the Intellectual and Developmental Disability (IDD) community. 

Don’t forget to wear your blue and yellow ribbons!