Monday, July 22, 2013

Turning Off Down Syndrome

So apparently scientists have now figured out a way to turn off the extra chromosome in a lab dish- in a sense, getting rid of Down syndrome- allowing higher function for individuals with Down syndrome and taking away some of the challenges and health risks associated with that extra chromosome.

Some of you may be so well versed on this already that you are sick of talking about it. Some of you maybe haven't heard about this at all. As someone very closely connected with Down syndrome, I heard this news and needed to sit on it for a while before I could put words together. I briefly scanned the article and then set it aside, trying to process this.

"Turn off Down syndrome."

There are concerns that this will fundamentally change who the person is- who the person was meant to be. There are arguments that it's selfish to not give the aid and help if it is available.

My first thought is- if I agree to "turn off" Addison's extra chromosome, does it mean I have been lying for the last three and a half years when I have said that she is perfect the way she is?

Is this like buying a pair of glasses for a nearsighted child, or is it treating Down syndrome as a defect in need of a cure?

When Addison was a baby, it was easy to dress her in cute outfits and use her as a prop- putting words in her mouth and shouting to the world how PERFECT she was JUST the way she was. It was easy to set the world's expectations of a little girl aside and focus purely on what I was given.

As she has grown into toddlerhood and taken this next phase by storm, it has been more difficult to place my take of what Down syndrome means on her. Because now she has her own take on it. She is still perfect. She is still wonderful. But I can see it in her eyes- the frustration when she is trying so hard to say something, but can't. I can tell when she wants to give up with a particular physical activity is harder for her to do than her brother. I have watched her cry as she recovered from surgeries that no little girl should ever have to face. And I have held her hand through hundreds of hours of therapy...where at times- if she could have cursed at us? She totally would have.

If there is anything I can do to help make Addison's life easier for her? I would do it in a heartbeat. But what if by changing this part of her- her entire personality is changed? What if the extra chromosome is more responsible for who she is inherently as a person than scientists would initially give it credit for? How can we separate the extra chromosome from the beautiful person she is?

But in the same breath- would this be any different than a surgery to help her heart work better? Or hearing aids to help her hear better? Or orthotics to help her walk better? Or therapies to help her learn faster? Would this one thing be able to take care of all of those issues with one drug therapy?

I've heard people say that individuals with Down syndrome are here to teach the world about kindness, difference, and love- therefore we can't deprive the world of that lesson by removing the effect of the extra chromosome! While I agree that Addison has taught our little world these things, is it fair to her to NOT give her available drug therapies just because WE need her to be a certain way? But then again...what if the therapies change who she fundamentally is- who she was created to be? What if this is a version of playing God by changing something beautiful that was created perfectly?

This new discovery raises more questions than it answers. The moral dilemma is tempering my excitement over the possibility of helping Addison achieve things more easily because of a simple drug therapy.

I don't think these questions will have answers for quite a while. I for sure am not offering Addison up as any sort of guinea pig in this experiment. I DO love her for EXACTLY who she is, but if someday safe, reliable drugs that could help improve her cognitive function as an adult without changing who she is was available? We would weigh the risks with the benefits and take it from there. Addison definitely doesn't need a "cure." But I make no secret of all her therapies and glasses/orthotics/possibly hearing aids help so that she can live life to its fullest. This is a tricky balancing point.

After saying all of that- I don't even really think that this is my decision to make.

It is Addison's decision.

This is her life. Her level of function. And by the time this drug should be safely available- I have a feeling that Addison will be old enough to have a very strong opinion of her own.

Meanwhile? We keep enjoying every day to its fullest- with that extra chromosome very much "turned on" and creating something very beautiful in our lives.

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