Saturday, July 20, 2013

Ground Breaking DS Research - My Minds Blown....

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  They won't be eradicated, right now they are - so many babies with DS are aborted b/c doctors are sharing outdated, misinformed information to new, scared shitless parents, and they are pushing abortion.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. 


  1. I think it's amazing and yes, mind blowing! It gives me such hope for other diseases and treatments, like you mentioned, Alzheimer's or cancers... imagine all that could be changed and fixed.

    Yes, you love Ollie just as she is. As I love my son, with is beautiful new heart and now disabled, just as he is. But, oh what I wouldn't give and what HE wouldn't give to be just a guy again, going through life with all the opportunities and health of his twin brother....

    Mind blowing.... God's will be done........


  2. I do not have a child with DS so I cannot really understand what this means for you and others. I can say that we are pursuing adopting a child who is HIV+, and there are many medical advances being made in this area that may effectively cure people. We have gone over our options for treatment and decided that yes, we would pursue those medical advancements. We don't care if our child is positive or not, but I do believe that our child will care and would like to lead the most typical life possible. :)

  3. Thoughts to ponder! I know DS from a bystanders point of view. I work for an ENT doctor and he sees many of the Downs patients for their annual hearing tests. I have grown fond of many of our patients and I agree with my friends grandmother who said "they have pure hearts". We live in such difficult times and our current administration has zero regard for any person that is not as they see it "whole". I think we need to pray and ask God. He is the one who sees all in our lives and giving a child the opportunity to lead a perfectly typical life seems to fit into His plan as I believe God loves all and particularly the children, and if they have a chance for a life where they would not be singled out I imagine they would feel free. I think everyone here stated such wonderful truths about their own situations with their own children. We should pray and see where God leads with this. Thanks Annie for sharing.

  4. Great post Annie! I'm still having a difficult time wrapping my head around the whole idea also! I have been thinking of this topic for days now. I guess I have come to the conclusion that if in the future there is something that helps Russell function better, live easier, lower his risks for certain diseases...Well, how could I turn that down? He's my son, I want the very best for him. It will be interesting to see where this all goes.

  5. Annie, I'm with you on how mind-blowing this news is. I've been thinking about it for a few days and don't know what it all means. Being able to lessen our daughter's risk for things like Alzheimer's and leukemia would be great. Turning off a chromosome so that it's easier for her to learn would be a blessing. And yet, I would feel like it would change a big part of who Ainsley is. It cannot be fun to not catch on to things as fast as her siblings. But part of what makes her great is that the accomplishments mean so much more because the journey to reach that goal has been tougher. Even she seems to savor those things more. She seems to love deeper and worry less. Would that be turned off too? I just don't know. So much to think about! Probably a good thing for me that this is probably years away from anything that would require a decision from us about how to go forward. I keep wondering what would Ainsley want. And I draw a blank everytime.


Thank you so much for your kind words & support! I love hearing from you & read each and every comment you leave for me! ~Annie


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