World Down Syndrome Day 2021

The following is a guest post written by our CEO, Alison Wilcox

Justine, left; Alison, right; Girl Guides of Canada – 1985

I have shared this photo before of my sister Justine and I, circa 1985.  We were proudly sporting our brand new Girl Guides of Canada uniforms and you can see the excitement on our faces.  Our first troop meeting was scheduled for the next day and we were about to have some great adventures together.

In honor of World Down Syndrome Day, I am featuring two of our sister Girl Guides and Girl Scouts who have Down Syndrome –  my sister Justine, now a Girl Guide Alum, and Gabby, a Girl Scouts Cadette in Rochester. 

I learned a lot of things from Justine (including some very cool dance moves), but one of the most long-lasting things I learned from her was about the importance of being welcoming and inclusive.  Justine has had many good friends and good experiences (including in Girl Guides), but she also has been called names and left out because she has Down Syndrome. Justine has tended to say what is on her mind and I was proud of her for all of the times she stood up for herself, and as her sister, hearing from her how words and actions hurt her, I also learned how important it is to stand up with her, and to do what I can to help spread awareness and kindness to others.  We have talked a lot this past year at GSWNY about diversity, equity and inclusion and although I consider myself on a lifelong learning journey, I can credit Justine and my family as the ones who started me on the journey.

Girl Guides was one of the programs that Justine and I could do together, and the leaders and other girls were very welcoming of Justine and we had a lot of fun.  Coming from a large family it was really nice for us to have some sister time with other girls our age.  We especially loved camping. Justine was always very involved in activities and she loved sports, writing, dancing and singing, and she was known as the life of the party.  I was really proud of her when she competed and won a race in the local Special Olympics and then was featured in a commercial – it was great to have a famous sister.  

Alison and Justine backstage after Justine’s performance – 2018

I almost always shared a bedroom throughout childhood (we have two other sisters – Abbie and Ayron) and Justine and I shared a bedroom for most of middle school. I was upset at first because our younger sister Ayron had just been able to move into her own room – it didn’t seem fair – but my mom wanted Justine and I to share because we were closer in age.  In the end, I really lucked out because we had a lot of fun together, and Justine was so neat and tidy (I was not) that she would often pick up after me and our room was much cleaner than I could have pulled off on my own.  Our other brothers and sisters still tease me about that to this day.

Justine and my family were a big influence on me.  I worked in special education for several years – 2 years as a Camp Director for Teen Camp (camp for teens with special needs), and 2 years as a teacher for students with autism.  Justine volunteered with me at Teen Camp when we were in our 20’s – she was very popular and the campers were sad when she went back home. 

FaceTime photo – Justine 2021 – keeping in touch through COVID-19

Justine also sang at my wedding and my husband David gave me a music box with the song as an anniversary present.  Whenever I miss Justine I turn the handle on the music box and think of her.  I also love visiting Justine each spring to see her perform in the annual musical in Orangeville with Community Dufferin.   Justine’s most memorable performance was when she had a solo number and sang a Céline Dion song! 

Justine lives in Orangeville, Ontario, Canada and although we haven’t been able to see each other in over a year because of COVID-19, we FaceTime a few times a week.  The first thing she wants to do when we can see each other again is go to Swiss Chalet – her favorite restaurant.  I miss Justine tremendously but I’m so glad she is safe and has had her COVID-19 vaccine – I can’t wait to see her.  Until then we have FaceTime.

Meet Girl Scout Gabby

Gabby, when she was a Daisy

Another amazing Girl Scout is Gabby, a Cadette with Troop 60003 in the Irondequoit Service Unit in Rochester.  Her mom Marisa is her co-leader and they have been in Girl Scouts for 7 years.

I had the honor of talking with Gabby earlier this week– our video chat is at the top of the blog post and you can see the video here.

Gabby shared her Girl Scout experience, what she has learned in Girl Scouting and what she thinks is important to be a good friend.  Gabby had some questions for me too – what Justine and I liked to do in Girl Guides and one of the most important questions – my favorite Canadian Girl Guide cookie! 

You can see another video of Gabby showing her sales skills when she was a Brownie:

A little snow doesn’t stop Gabby!

Not shown in the video was the earlier conversation on Zoom with Gabby and her mom Marisa.  Gabby is a typical 7th grader and she wanted to be in the video by herself so she quickly shooed her mom out of the room!

Gabby, when she was a Brownie

Marisa is the co-leader of Troop 60003 and she shared how much she enjoys leading the troop and I thanked her for all of the great work that she does – Girl Scouting is made possible because of our dedicated volunteers.  Troop 60003 is very active and you will see photos of their activities below. (please note all group photos were taken pre-COVID-19)

Marisa shared her experience as Gabby’s mom:

“As a young girl I was in a YMCA dad/daughter program (now called Adventure Guides), but thanks to my daughter I’m now a Girl Scout. I strongly believe in volunteering and have always done so in some capacity. When Gabby started kindergarten I knew I had to sign her up. Before you know it we’re all in and I’m the Cookie Mom/Co-leader, fast forward 7 years and we’re still in with a majority of the original Troop. 

Throughout the years we’ve had many conversations with the Troop about Down syndrome. The girls are great with her and show their support by attending The Buddy Walk. For the Troops’ Bronze Project they chose to organize a Hawaiian themed dance for the Flower City Down syndrome network.”

Marisa and Gabby at Gabby’s Bridging ceremony when she bridged to Junior

 Marisa’s Advice:

A few facts to help you better understand Down syndrome (Ds):

1. You cannot catch Down syndrome, it’s something you’re born with. 

2. Most people have 23 chromosomes, 1 tells if you’re a boy or girl and then you get 11 chromosomes from mom and 11 chromosomes from dad. People with Ds have 3 copies of chromosome #21, which is why it’s called Trisomy 21. 

3. It can take longer for people with Ds to learn, they will learn it just may be at a slower pace than you. 

4. Everyone wants friends and to feel included. You can’t change who you are. 

5. It’s ok to ask questions, most parents don’t mind and would prefer that then staring.

Words from Gabby

And to close out our blog post (and make sure to see the video), these are closing thoughts from Gabby:

Everyone is a little different. Just be yourself. Be respectful and kind.” – Gabby


WDSD is a global awareness day to advocate for people with Down Syndrome – held annually on March 21.

3-21 chosen for the ‘triplication’ of the 21st chromosome which causes Down Syndrome

Visit the website to learn about Down Syndrome and ways to show support:

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