National Down Syndrome Day; March 21, 2022

Post written by Renee Everwine

Down’s syndrome, affects approximately one in 700 births. It is the most common chromosomal condition diagnosed in the United States. About 6,000 babies per year are born in the United States with this condition.

There are three types of Down’s Syndrome. Trisomy 21 is the one most recognized as it appears in 95% of the babies born with this condition. Translocation and Mosaic follow in order as only 2 and 3 percent of babies are born with this classification of Down’s Syndrome.

Even though Down’s Syndrome is becoming fairly common in the United States there is very little funding given to genetic research for this condition. The theory that life expectancy has risen and that the patients have done very well in their daily lives may attribute to the lack of money available for research.

I am one of the ones blessed to be raising a child with Down’s Syndrome. I adopted my daughter at the tender age of 4. I was 54. Many of you are thinking at this point that I must have been out of my mind. That very thought crossed my mind many times before making the final decision for adoption. I had previously adopted 4 of her siblings and there were many times that I felt like I could not give this little girl the life that she would need. As the days progressed and the thoughts of separating this child from her biological siblings embraced me, I knew that the only possible solution to this little hiccup in my life was to give this sweet little girl a life that included being raised with her biological siblings.

Going through the motions of learning the things that this child would or not be able to do was emotionally challenging for me. I wanted to give her the most normal life that she could have. At the age of 54, this was going to be challenging and I realized that from the start. I was, however, blessed with having three of her siblings still residing at home that jumped right in to help. They, along with my husband, helped spoil her. It’s such a natural thought to feel a slight twinge pulling at your heartstrings when you see a little one with Down’s Syndrome. It’s completely normal to feel that they need extra attention and boy did she get it. That little extra attention has now developed into a strong-willed, stubborn little girl who thinks she rules not only the household but the world. And although she doesn’t have the muscle tone that one might need to play professional sports, she enjoys playing basketball (yes she can dribble a basketball) and she can hit and catch a softball as well as throw it to someone on her team or maybe at the opposing team. Okay, so we haven’t quite learned the fundamentals yet but we are getting there.

The biggest challenge and hurdles that one must face having a child with Down’s Syndrome is that we spend a huge amount of our time trying to find ways to make their life as normal as possible. However, no matter what that normal looks like, to us, there are still issues they must face in this world. One of those issues being we spend so much time working on things that she can do to fit in that we fail to realize that we as a community, state, world, and nation are not educated enough to help them fit in.

National World’s Syndrome Day is a great reminder that we need to advocate for these precious souls. Advocating for their normalcy must include educating ourselves as to what we can do as “normal” adults to help these extra special children live a meaningful life. Join me in celebrating National Down’s Syndrome Day by asking yourself, “What can I do to help improve the life of someone with Down’s Syndrome?”. I am pretty sure you will be glad you did.