Turning off Down Syndrome

There has been so much in the news lately about new research that is being celebrated as a possible cure for Down syndrome (Daily Mail).

I mean…is it even possible? Some of the testing is done at specific times during development, some of it is on a cellular level which seems like an impossibility for an already living person- how do you remove EVERY extra 21st cell that’s affected in their body? Mind blown.

It’s become a hot topic…some people are excited but others are upset.
I have a hard time defining how I feel about the whole issue.
People are people- we should love, accept and embrace our differences. We are broken, imperfect people awaiting the full realization of who we are in Jesus Christ!
But it’s just not that simple. People who are different are treated as such.
Eli’s different, but that doesn’t have to be a bad thing. His differences are what enhance our family. Our differences are what make this world so diverse and amazing. I wish the rest of the world felt that way.

There are serious implications to what research like this is suggesting: a cure.
I don’t think Eli needs to be cured. That suggestion alone is scary. Down syndrome is a part of who he is- if that were to be erased…well I don’t know how that would change the person that he is. It’s been suggested to me that our DNA doesn’t have to define who we are. (Hello nueroplasticity! I love you!)
As in Eli would be Eli whether he had DS or not.
I believe we have the amazing ability to change, grow and diversify who we are…but at the core I do feel DS still shapes who Eli is (especially as a 16 month old lol). That’s not to say that he is defined by ridiculous stereotypes that are perpetuated about DS. But it’s hard to separate what is DS and what’s just Eli…is it that simple? For the sake of our love for Eli lets just say this- we live in a fallen and broken world. We are *all* limited by our physical bodies and eagerly await healing in Jesus Christ.
But we love Eli for who he is, DS or not. He was designed perfectly as he should have been on this earth as God designed him. He’s here to serve a purpose just like the rest of us.
I don’t want to debate about how DS affects Eli and whether that defines him completely as a person or not. Because on many more levels it doesn’t. But it’s just not a simple thing…

On the flip side, lets look at what else the proponents of this research are excited about…erasing Down syndrome.
Implying that a whole population of people should be erased because they are “flawed” is disgusting, honestly. Eli isn’t sick. He isn’t broken. He is just like the rest of us- in need of love, acceptance and guidance as he learns and grows. He deserves that just as any other person. Singling out a group of people as needing to be fixed just perpetuates negativity toward people with DS.

On a positive note, I can see the benefits of something like this. Down syndrome is one of the least funded areas of research yet one of the most commonly occurring chromosomal abnormalities in the world (most commonly occurring- God doesn’t make mistakes!).
If more funding were given to further research that could enhance the lives of people with Down syndrome…well I’m all for that. I don’t want to change Eli but I do want to help him be as successful as possible- to live up to his full potential. Isn’t that what every parent wants for their child?
If research were able to find a way for Eli to remember more, enhance his cognition, improve his speech or abstract thinking…that would be incredible.

My hope is that this will spark more research that will create more therapies and treatment options for my boy.
He’s not more special than any other child. We aren’t special because we are his parents. He’s not a “downs baby”. He’s a person who will grow, learn and change as he is shaped by his experiences and environment. Lets make it a good place for him. Lets allow him to define who is he. Lets support him all the way.
More research for sure. More love and acceptance on this side of heaven. 🙂


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