oday is World Down Syndrome Day, which is observed to raise awareness about what Down Syndrome is and celebrate those who have Down Syndrome. Why is Down Syndrome celebrated on the date 3/21? Down Syndrome occurs when there are 3 copies of the 21st chromosome.
As most of you know, my three-year-old daughter, Charlotte, has Down Syndrome. It’s one of those things that I often forget about in our day to day, even though it is such a big part of our lives. To us, she is just Charlotte- who happens to have Down Syndrome…and more sassiness than a three-year-old should ever have. On days like this one, I remember a time when I didn’t know anything about Down Syndrome.
When I first found out that my sweet, unborn daughter had Down Syndrome, I quite simply lost it. I thought every single moment of my family’s days would be devoted to caring for Charlotte. There would be no vacations, no parties, we would go into bankruptcy, etc. I’m not dramatic at all. Well, this obviously could not be farther from the truth and we feel quite lucky every single day to have this extra special part of our life. In my quest to raise awareness about what Down Syndrome truly is and is not, I want to share with you twenty-one (get it? Twenty-one facts for twenty-one chromosomes) facts about Down Syndrome.
1. Down Syndrome does not just occur in pregnancies of older women- in fact, 80% of all babies born with Down Syndrome are born to women younger than 35.
2. Down Syndrome is very rarely hereditary. When it is, that is called Translocation Trisomy 21, and this only occurs about %4 of the time.
3. It is called Down Syndrome not Down’s Syndrome. Complete honesty- it is like nails on a chalkboard when people say Down’s Syndrome.
4. A high percentage of babies with Down Syndrome are born with a congenital heart defect, often requiring surgery.
5. People with Down Syndrome contribute to society in so many ways and want to live independent lives, just like the rest of us.
6. Everyone that has Down Syndrome has a cognitive delay, most often this ranges from mild to moderate.
7. People who have Down Syndrome are NOT always happy. While this is a sweet sentiment, it is very untrue. If you don’t believe me, stop by my house when I’m brushing Charlotte’s hair- you’ll see.
8. Children that have Down Syndrome often have low muscle tone. This do not mean that they are weak, rather that the typical muscle tension is not there. My favorite non-medical term for it is “floppy” because it describes it %100 accurately. Best thing about low muscle tone- the hugs.
9. Speaking of muscle tone…. most people that have Down Syndrome will need a few types of therapies (most often physical, occupational, and speech) often starting from infancy.
10. Life expectancy has increased drastically from being just 25 in the 1980’s to now being well over 60. This is thought to be largely due to better medical care and to decreased rates of institutionalization.
11. While children that have Down Syndrome do often share common features (almost shaped eyes, small stature, sweet round faces), they more closely resemble members of their family.
12. Unfortunately, people that have Down Syndrome are more prone to certain medical conditions: childhood leukemia, Alzheimer’s, Autism, and seizures.
13. The divorce rates among parents of children that have Down Syndrome is lower than the national average.
14. Inclusion in school systems has been shown to be beneficial for both the children that have special needs and their typically developing peers.
15. People that have Down Syndrome have all different kinds of hobbies and interest, just like everyone else.
16. A growing number of adults with Down Syndrome are now living independently with assistance from family or community.
17. A study showed that 99% of adults that had Down Syndrome were happy with their lives. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3740159/
18. 1 in 700 babies are born with Down Syndrome
19. Adults that have Down Syndrome can go to college! An increasing number of colleges are creating programs for those with intellectual disabilities.
20. Kayla McKeon is the first registered lobbyist to have Down Syndrome!
21. A small, but growing, number of people that have Down Syndrome have drivers’ licenses (including Kayla McKeon!)
With all that being said, I hope that what you take away is that we are all really more alike than different. However, as a good friend of mine said recently, the differences are really where the magic occurs.
Happy World Down Syndrome Day everyone!!!
Welcome! I’m Dannah.
I’m a full-time working mom of two young kids and a fur mom to a Boxer and a Cavalier King Charles Spaniel. I’m a multi-passionate entrepreneur with my main focus being on creating community for the women of RVA. I can’t wait to meet you at an upcoming event!