March 21st is known around the globe as World Down Syndrome Day. Why? Good question! Trisomy 21, the clinical term for Down syndrome, is a congenital disorder caused by a chromosomal defect. Individuals with Down syndrome have an extra chromosome on their 21st pair, giving them 3. So, get it? Three of the 21st… 3/21. Down syndrome is the most common chromosomal disorder, accounting for roughly 6,000 births per year in the United States alone. Having Down syndrome alters the individual’s development both intellectually and physically. But like every child of God, each individual is given a unique set of gifts, challenges, and characteristics.
This is my sister, Annie, and it is clear she rocks that extra chromosome. Growing up, she could make me laugh until I cried. She has taught me about patience, love, perseverance, and the importance of routine. She has taught me to sing and dance with my whole heart and to enjoy the little things. She is a wonderful, thoughtful human being. She is a doting Auntie. And there is nothing “down” about her… especially in that last picture, taken when she was three and had been caught talking to herself, having a blast, while placed in a time out.
In today’s society, we’re pressured to think that anything different is wrong; that disorders and defects should be eradicated. Sadly, that number of births has lowered throughout the years as prenatal genetic testing advances and women choose to terminate an “unhealthy” pregnancy based off this diagnosis. I can’t imagine my life without my sister. I can’t imagine a world where
these shining lights aren’t present to share their worth and teach us about compassion. God has blessed so many lives by bringing Annie, and those like her, into this world. Every life is a gift and I intend on celebrating that. I believe it is our job (and pleasure) to spread awareness of this diverse community. Let’s promote their importance and support their dreams!
If you’ve been around here long enough, you know I’m a fan of children’s books and I think reading to children about Down syndrome can be a great way to answer some of the questions that little (and big) ones tend to have when meeting or interacting with someone who has Ds. Here are two recommendations:
Hannah’s Down Syndrome Superpowers – This book is fantastic because it focuses on how we are more alike than different. Some examples of Hannah’s superpowers are: she’s a fun friend, a terrific truster, she has fabulous flexibility, and even a stupendous stubborn streak. But the best thing about this book is that after each description of her superpower is a box with “helpful hints for friends” which describes how we can help individuals with Ds navigate these powers “in the wild”. There are some helpful phrases we might offer or just some things to keep in mind when they react the way they do. While each person is unique, there are a lot of commonalities in personality and tendencies, and I think this book explains them very well (even for adults!) The author has also written books to describe Autism Superpowers and a newly released book about a boy with Cerebral Palsy Superpowers!
47 Strings: Tessa’s Special Code – This book is great because it goes into the science behind the genetics of Down syndrome. It is written by a mom who wanted to explain to her stepson why his new little sister is the way she is. She delicately explains that she’ll need family and friends to be there for her throughout her life, but she’ll do exciting things in her life just like he will!
I want to do a little something to help this community and shout their worth, and last year, I asked for donations for Ruby’s Rainbow. I’m proud and humble to report that my friends and family raised $247 which went towards scholarships to those beautiful individuals with Down syndrome who dream of achieving higher education or vocational classes.
This year, I am asking for donations for a wonderful organization I ran across called Hearts of Joy International. They are a 501c3 non-profit organization that provides life-saving heart surgeries for little ones with Down syndrome in countries where families cannot afford medical care. A typical heart surgery costs $15,000! Last year, they healed the hearts of 19 precious children in the countries of India, Uganda, the Philippines, and the United States.
Fifty percent of babies with Down syndrome are born with a congenital heart defect. Surgeries are recommended before the age of six months in order to correct the defect and prevent life-threatening damage. As you can imagine, not all countries of the world have the technology and resources to detect, monitor, and treat this diagnosis, and this is where Hearts of Joy steps in to help.
You can donate directly on their website by clicking their name above. (Or if you are a personal friend of mine, you can go to my Facebook page and donate through the fundraiser I’ve organized.) As you can imagine, the current COVID-19 crisis is directly impacting their future missions, and many of the kiddos awaiting surgery already have very poor lung health, so please keep them and their families in your prayers. You’ll want to follow them on Instagram @heartsofjoyinternational to get updates and see these smiling faces because they are sure to bring you JOY.
Here are a couple of other fantastic companies owned by individuals with Down syndrome that I’d love for you to check out and support:
John’s Crazy Socks – John has a love of colorful, seasonal, themed, and funky socks, and he gives some of his proceeds back to the Special Olympics.
Troy Made It – Troy makes beautiful pieces of pottery and sells them in his Etsy shop, with 100% of his proceeds donated to Ruby’s Rainbow and other companies. You can follow him on Instagram @troymadeit for shop updates.
I thank you for taking the time to read this and I encourage you to reach out to a friend, friend of a friend, or an organization, to learn more about Ds, and to help that unique individual and his/her family feel included, welcomed, and accepted. There’s nothin’ Down about it! 😉
(This post contains affiliate links to Amazon. If you purchase the recommended books from these links, I receive a small commission at no extra cost to you, so thank you. 😊)
“Yet, You Lord, are our Father. We are the clay, you are the potter; we are all the work of Your hand.” Isaiah 64:8 (NIV)