This week I heard about this new article where scientists have figured out how to turn OFF Down Syndrome. Before you get all up in arms for many reasons GO READ THE ARTICLE.
I read it, then I read discussions online between many of my friends and you see my mind is BLOWN. Jade & I can't wrap our brains around this. I'm writing this blog not to start controversy, not to debate with others opinions, but to simply put out there things on my mind. If you have nothing nice to say, please say nothing at all - warning you in advance I'm not putting up with nasty comments.
My initial thoughts were - this is the end of Down Syndrome, they will eradicate babies like Ollie. Then I started thinking more into it. They won't be eradicated, right now they are - so many babies with DS are aborted b/c doctors are sharing outdated, misinformed information to new, scared shitless parents, and they are pushing abortion. This is happening right now. Not ALL doctors, but many doctors. Insurance companies don't enjoy babies that medically cost a lot of money & some countries are pushing for NO kids with DS by 2030 - think about that a second - what doe that mean???
So perhaps this treatment may save the lives of many, many babies. Or perhaps new parents will be pushed into this treatment option before they really know the right option for them - I can foresee that too. I just don't know!
Further questions - right now toddlers with DS have a much higher chance at developing leukemia but also a much higher chance of beating that cancer too. So this makes me wonder - is the key to beating cancer hidden in that extra chromosome - if you turn it off will our kiddos be less likely to beat cancer but much more likely to get it - that's scary in itself! Is there a miracle in that mix of an extra chromosome that has the potential to save a mass amount of lives? Again I just don't know! All I know is there isn't enough research on it.
Then throw in the fact that people with DS have much higher rates of developing Alzheimer's at a young age, in fact it's been found that patients with Alzheimer's often have 3 copies of the 21st chromosome in some of their cells - there is a link. If they turn off the extra DS chromosome will our kiddos be less likely to develop Alzheimer's so young because that would be a huge blessing? No one wants their 30 or 40 year old suffering from Alzheimer's and it scares me to know it's quite possible.
Now to the part that truly blows my mind. When we were pregnant and had this diagnosis - we accepted Ollie for who God created her to be. We educated ourselves and celebrate every tiny piece of her. But I never in my wildest dreams imagined that in my lifetime there would be a way to help her cognitively to a point that she could possibly function like a typical person with 46 chromosomes. Most of you won't understand this b/c you don't have a kid like Ollie but imagine trying to make that type of medical decision for your child. I say I'd never change her no matter what - that God created her like this for a reason - and trust me I mean all of that. But I also read a friends comment who has an older adult daughter with DS who would want this treatment because she wants to be typical so badly. We aren't there - my daughter is 2 - what would Ollie want? The fact is - it's not my decision it's Ollie's. What if this is an option for her one day, what if she gets to decide, what if I have to decide for her? How in the hell do you know?
It seems partly like playing God but then I look at people with huge medical gifts - her heart surgeon that repaired two major holes and a valve in her strawberry sized heart - what if this is another gift from God - that he gave someone the talents to change things?
What if this could be used to save the lives of babies with Trisomy 18 or 13 in utero? Or kiddos with extra pieces of chromosomes that have terminal conditions - just think about it - mind blowing isn't it!
Anyway - I had to share the article because I just am not sure what to think of it. And fortunately we have a lot of time before it's going to be something truly available or affordable where it's even an option to our family but I talk a lot about education and advocating for my daughter and sharing this is doing that for her.
So say some prayers that God's hand is in ALL of this.