Down Syndrome Awareness Day 13: Why would you want a cure for JOY?!?!

On more than one occasion, I have been asked, regarding Jack's Down syndrome, "But, he'll grow out of it, right?" or "But, there's a cure for it, right?" or, my favorite, “I'll pray for him to get better."

Really?!?! I hope most of my friends and family know this already, but I want to be sure people understand that Down syndrome is a genetic condition, not a disease process. There is no cure for Down syndrome.

Jack will always have Ds and, and he will never "outgrow" it. Therefore, no one can "pray it away." It is part of who he is, but it is NOT all that he is. We adore Jack ... just the way he is. And honestly, if taking away his Down syndrome meant changing Jack and possibly affecting his sweet, loving, giving personality, I don’t think I would. There’s a saying — I wouldn’t change you for the world, but I would sure change the world for you — and, I’d say that represents my feelings.

While there is no cure for Down syndrome, research is making strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Because of these advances, scientists now feel strongly that it may be possible to improve, correct, or prevent many of the problems with cognition that are associated with Down syndrome.

Individuals with Down syndrome have an extra copy of their 21st chromosome in every cell of their bodies. There is no way of changing that. But ... what CAN be changed about Down syndrome is the way people perceive, treat, and value individuals with Down syndrome. The way others make fun of and say things that hurt people like my son Jack CAN be changed.

One of my greatest hopes in this world is for everyone to see Jack the same way we see him, which is just as a kid, and not as just a diagnosis. And, I don't think that's too much to ask.