Wednesday, March 21, 2012

Happy World Down Syndrome Day!

This is the first year that World Down Syndrome Day is officially recognized by the United Nations!  World Down Syndrome Day is celebrated on 3/21 to symbolize the 3rd copy of the 21st chromosome in Trisomy 21, which is the most common form of Down syndrome.  To be honest, I feel like now is an incredible time to have a child who has Down syndrome.  There are many resources both in our community as well as online.  We are able to communicate via email and messaging with parents all over the country who also have children with Down syndrome.  

Today is also the one year anniversary of Cowgirl Up!  Just one year ago on World Down Syndrome Day, I started our blog.  How did a year go so quickly?

We have also had the privilege to meet incredible local families who share in the journey with us and who take time to meet with us and share their families' experiences in trying to guide us through our own.  Because of Joey's extra chromosome we have found many, many extra blessings.

We are planning on having a BIG Wednesday to celebrate Joey's extra chromosome all day.  (What is also very cool about 3.21 is that both his cousin Carly and his uncle Eric celebrate their birthdays on 3.21 as well. Happy Birthdays to Carly and Eric and Mallory (who's birthday is just 4 days later on the 25th)!

A couple of Joey and Tommy's little buddies are going to stop by after school to help us celebrate the big day with some cupcakes, snacks and a special story we are going to read together.

Down syndrome has changed our lives forever in an incredible way.  One thing I know for sure is that Joey's extra chromosome is packed completely with joy, laughter and love. I don't know how, but him having Down syndrome has managed to sharpen my lens on life.  When you go to the eye doctor and they try different prescriptions and suddenly one of them is super clear-- that is what Down syndrome has meant to us.  Every single day is meaningful.  Every single day we are grateful that Joey has made it to our arms.  Every single day we feel so grateful to have him in our lives. 



One of our online friends at Nuts About Nathan posted 21 Facts about Down syndrome and I thought that was a wonderful idea to help spread more awareness about Down syndrome.  We've borrowed a few from their list and some others from the National Down Syndrome Society.  

Thank you for sharing in our journey as we learn more and more about Down syndrome every day of the year.  As our Buddy Walk Team shirts say, "Love Doesn't Count Chromosomes."


Facts About Down Syndrome

Down syndrome is the most common chromosomal condition in the world.

One in every 691 babies in the United States is born with Down syndrome.

There are more than 400,000 people living with Down syndrome in the United States.

Down syndrome occurs when some or all of a person's cell have an extra, full or partial copy of the 21st chromosome. This additional genetic material alters the course of the development and causes the characteristic associated with Down syndrome.

Down syndrome occurs at conception.  Nothing in the pregnancy "causes" Down syndrome to occur.

Down syndrome occurs in people of all races and economic levels.

Children with Down syndrome have a 15-20% higher risk of leukemia. 

There are 3 types of Down syndrome:
Trisomy 21, Mosaicism and Translocation

  • Trisomy 21 occurs when three copies of the twenty-first chromosome is created instead of only two. This results in the person possessing 1 extra chromosome (47 chromosomes instead of 46). According to the NDSS Trisomy 21 is the most common form of Down syndrome and accounts for 95 percent of all cases. 
  • Mosaicism Down syndrome occurs when some of the cells within the twenty-first chromosome have three copies (like Trisomy 21) and the others have the standard two copies. The NDSS reports that this occurs in 2 percent of Down syndrome cases. 
  • Translocation appears when there are three copies of the twenty-first chromosome, just like Trisomy 21, but one of those three chromosomes becomes attached to another chromosome, instead of staying separated. According to the NDSS this extra twenty-first chromosome can become attached to the 13, 14, 15 or 22 chromosome and accounts for 3 percent of Down syndrome cases. 
Normal Chromosomes (Male)
A typical set of male chromosomes

A male with Trisomy 21.
The 21st chromosome is the smallest of all the chromosomes.  

The average life expectancy for people with Down syndrome was 9 years old in 1929.   In 1983 it went up to 25 and today the average is 60.  The oldest known living man with Down syndrome, Bert Holbrook, just passed away in early March at age 83! 
Down Syndrome Pregnancy offers a free downloadable pregnancy book called "Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome".
Congressional Down Syndrome Caucus (CDSC) has over 70 Members of the House of Representatives, and is led by Reps. McMorris Rodgers (R-WA), Pete Sessions (R- TX), Van Hollen (D-MD), and Holmes Norton (D-DC). The mission of the CDSC is to educate Members of Congress and their staff about Down syndrome. The Caucus supports legislative activities that would improve Down syndrome research, education and treatment and promotes public policies that enhance the quality of life for those with Down syndrome.  *From Ohio- Reps.Tim Ryan (OH-17)and Pat Tiberi (OH-12) are both members of the CDSC.

Down Syndrome Daily is a wonderful resource for daily news updates on the latest in the Down syndrome community.

Princess Diana's Goddaughter, Domenica, has Down syndrome. 


Many children with Down syndrome are included in regular education classrooms alongside their peers.  Research has shown that this has positive effects on the academic and social experiences of students with and without disabilities. Celebrate inclusion this World Down Syndrome Day!
The bipartisan, bicameral Achieving a Better Life Experience Act (ABLE) of 2011 (S. 1872/H.R. 3423) was introduced on Nov. 15th, 2011. The bill, which is supported by 83 Representatives and 9 Senators, gives individuals with disabilities and their families the ability to save for their child's future just like every other American family! 

There are many, many more facts about Down syndrome, but most important of all is spreading the word that people who have Down syndrome are more like everyone else than they are different.
Happy World Down Syndrome Day!!!



  1. Truely inspirational :)

  2. Those shirts are AWESOME!!!!!!

  3. I've been wanting to read that book too. My parents know the woman who wrote it (and her son Ben!) and have a signed copy at their office.

  4. He is so adorable. I also have a son with downs. He is my world waiting anxiously till he says "mama" :)


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