World Down Syndrome Day #MyVoiceMyCommunity #WDSD17 #lotsofsocks
"Did you know that Down Syndrome occurs in 1 in every 792 live births. Individuals with Down syndrome have 47 chromosomes instead of the usual 46 ". With those stats in mind you might think more of the differences in these individuals when really they are just like everyone else. They have good days and bad, want to learn new things, be challenged, get frustrated when things don't go their way, and most importantly they want to be seen for who they are - very much like each of you.
Take for instance Laura's brother Brian. Laura shared with me that Brian has four nephews and is an awesome uncle to them. He loves to workout at CYCLEBAR with his whole family! It seems that Brian just cannot get enough of the music, the lights, and the atmosphere. Laura said that he always "brings so much energy and joy to [their] class". That sounds like the kind of guy most of us would love to have in a class. I know I would!
Some pictures of Brian working out:
Then there is Arianna, my best friend's little girl. She is an April baby, just like me (her Aunt "Carrot"). This young lady had a really rough start.She was intubated almost immediately at birth because she wasn't breathing properly. The doctor's soon discovered that Arianna had a swollen liver and spleen and an extremely high white blood cell count. She was admitted to the Level 3 NICU at St. Mary's Medical Center in Florida.
There she was diagnosed with TMD, a form of leukemia that is specific to Trisomy 21. Arianna was treated with two courses of chemo encompassing the first two months of her life. In mid June, she had a bone marrow biopsy that came back free of cancer. She has been officially in remission since June 25, 2014. Today, she is a precocious little girl who apparently has now learned how to use filters on Snapchat with her mom and especially loves the puppy one. She is just beautiful inside and out and we are so grateful to have her in our lives. It is hard to believe this baby is going to be three years old soon!
Here is Arianna with my dog Castle when I visited her last summer. Just below that is a gorgeous picture of her just enjoying nature. She makes my heart happy.
I would be remiss if I did not also mention Cody, my awesome running buddy that I was matched with through IRun4. This group matches runners and fitness enthusiasts with individuals with disabilities. It is an amazing experience for both individuals.
My running buddy experiece resulted in a perfect match! Just like me Cody loves all things geeky, especially Captain America and Spiderman. We also share a love of cheerleading too (I was a cheerleader as a young girl). We share one other thing in common - we both have asthma.
I don't really think I run for Cody. It is more like we run together because I always think of him whenever I go out to run. If I have a bad race or don't want to workout he usually comes to mind and helps put things in perspective for me. I just picture him dancing as he gets off the school bus like his mom says he does sometimes and think.... I want to be more like him!
So here is the skinny. Down Syndrome is not related to race, nationality, religion or socioeconomic status. It doesn't care who you are or where you come from. We cannot cure it. One day we may be able to prevent it. Until then, we celebrate those who are not letting themselves be defined by it.
In honor of this day of celebration and acceptance, please take the time to purchase a ONE OF A KIND T-shirt that features Arianna's Chromosomes. All proceeds go to the Down Syndrome Association of Greater Cincinnati (she currently resides in Ohio).
Please see link below:
"People with Down syndrome must be included, on a full and equal basis with others, in all aspects of society . It is up to that society to become better educated and learn more about what makes us each different is actually something to be so very proud of. If you want to help spread awareness today please wear your best and craziest socks today and invite all your friends, family and colleagues to do the same. Use these hashtags in any World Down Syndrome Day social media posts - #lotsofsocks #MyVoiceMyCommunity #WDSD17
1. World Down Syndrome Day Toolkit 2017, https://worlddownsyndromeday.org/sites/default/files/WDSD%20Social%20media%20pack.pdf [accessed 19 March 2017]
2. World Down Syndrome Day Toolkit 2017, https://worlddownsyndromeday.org/sites/default/files/WDSD%20Social%20media%20pack.pdf [accessed 19 March 2017]
For more information:
Down Syndrome International
WDSD Website: https://worlddownsyndromeday.org
DSi Website: https://ds-int.org/