The Hailey Herald

The Hailey Herald

Saturday, October 3, 2015

Turning Off Down Syndrome

This is a post that is a constant battle between ethics, technology and my heart.

It's difficult to watch the news the past few months and not hear or see the headlines, "Scientist found a way to turn off Down syndrome gene".  What does that mean for the future of Hailey and the hundreds of thousands others with Down syndrome?  What are researches trying to accomplish?  The answer to both of those questions are "I'm not sure.  I don't know."

What it does do for us at the moment is question things.  Ethical, emotional and personal questions.  The biggest question that has to be answered is "What part of Hailey is Down syndrome?'  Some of it is obvious.  Some can be seen immediately when a person looks at her....lack of a nasal bone, almond shaped eyes, small mouth, occasional tongue protrusion (due to small high narrow palate and low muscle tone), small low set ears.  A few other traits, one would notice after watching Hailey for a few minutes, low muscle tone, speech delay and hyperflexibility.

After that, everything blurs and things are no longer black and white.  Everything is gray and murky.  What other traits of Hailey's are due to Down syndrome?  What traits are just because she is Hailey and they are a part of me and a part of Jason?  She is incredibly stubborn...some would say that is a part of Down syndrome and others would say that they have never met my family members :-)  What about her love of music.? The "need" to dance no matter where she is or who is around.  What about her love of people and the desire to interact with every person she sees?  People in church, the man waiting for his oil change, the car beside us, the gentleman bagging our groceries.  She has to wave, blow kisses and touch them.  What about her sassiness?  The way she shakes her hips and her finger as she tells me "no".  Her smile, her dimples, her laugh, her hugs.

Where does Down syndrome end and Hailey begin?  The answer isn't simple because they are melded together.  I personally don't think there will ever be a way to separate the two.  I know that I personally don't think I could ever agree to anything that could possibly change WHO Hailey is....her personality...her soul.  Down syndrome is a part of her, not all of her, but it isn't black and white.  There is only gray, but in this case the most beautiful gray I have ever seen!


  1. This is an interesting topic for sure...I agree, it's a very grey area. I think the only reason I would want to "turn off" Down syndrome, would be so I could hear my son talk...In sentences, about any and everything on his mind...But beyond that, I wonder what would change, like you said...Where does Ds end and our kids begin?