Shutting off ‘Down Syndrome’ gene-A Mother’s take !

I know this post can get me in a lot of trouble because one, I have never been a politically correct person and two this is a very sensitive issue I am taking up.

First let’s take a look at what “Research community “across the world writes-

“This is a very elegant new research study and a spectacular accomplishment,” says Dr. Michael Harpold, chief scientific officer for the Down Syndrome Research and Treatment Foundation. This will provide additional new research tools to further understand Down syndrome and enhance progress in cognition research to benefit individuals with Down syndrome.” For example, children who have Down syndrome have a higher chance of dementia as they get older, but if cells of the brain could somehow be targeted, that particular risk may be reduced. The hope is that if it could be done, it would help to reduce some of the symptoms associated with Down syndrome, or potentially alleviate them,” said Courtney Burans, a certified genetic counselor with Lehigh Valley Health Network.

             The moment, this breakthrough in research was published online, the web has become a battleground of sorts. Except for very few, most parents are feeling hurt, outrageous and going out of their way to tell the world how much they love their child and don’t care for this specific medical advancement in the genetic field. This is what I am not able to understand. Parents are writing how it would change the child fundamentally, they are declaring more than discussing and now there is a general consensus and anybody who feels the other way, would fear being considered an outcast.

According to the National Down Syndrome Society, in 1983, the average life expectancy of a person with Down syndrome was just 25 years. And now the current life expectance is almost 60 and more. What has changed? Not the chromosomes, not the trisomy of 21. It is only Medical advancement. I am pro choice and I have seen my daughter suffer endlessly, when she went through an open heart surgery and was on ventilator for 26 days or getting her thyroid tested every six month by piercing needles through her delicate skin. I have seen her crying and sobbing for passing a stool because of consistent constipation and how she has struggled to walk, jump or run. I know, with her in my life, I have become a person beyond what I thought I could be. But I am ready to give it all up for making sure she never has to go through any of this ever again.  I do not love her because she has Down syndrome or has certain characteristics unique to it. I love her because she is my daughter. She has my eyes and my husband’s forehead.

I understand there can not be a ‘Yes’ or ‘ No’ answer to this research finding but getting on a back foot even before we know what can it help with or assuming  it can not alleviate medical problems associated with this extra chromosome, seems a little unreasonable. This is what the research clearly suggests, that it may reduce symptoms associated with Down syndrome, not the syndrome itself. I wonder how many of us would not like to have better speech and cognition for our kids.

Some think that the people with intellectual disabilities help in creating a compassionate society. It is true but would we deny our children the right of a better life to help create and maintain this humane society.

In one of our meeting with other parents, everybody was sharing how they have a fulfilling life because of their beautiful kids and I couldn’t agree more. My daughter has made me a better person. But out of curiosity, I asked this question to the group that, if they could take their child’s extra chromosome away, would they do that? And I got a mixed response. some immediately said  “No” some pondered,  but everyone agreed that they would not change, who the child is but welcome anything that can minimize the medical problems like the predispositions to thyroid, possible leukemia or dementia and the threat of an early Alzheimer. And that is exactly the point I am trying to put across.

We all parents love our children unconditionally and would not put them up for experiments that would change them but if such research paves a safe way for our kids to have better cognitive abilities or lesser medical issues, I think I would look forward to it. After all Down syndrome is only a part of my child, it does not define her.

For those who think that this research might alter them as a person or will have life changing repercussions. I can only say that there are possibly 10 years for us to find that out and if that will be the case, we will have every right to, not go ahead with the findings. But keeping fallacious assumptions and a cynical attitude, about the research from the word “Go” is not something that our kids have taught us.

Dwelling on another burning issue, this research would positively impact the parents with the unborn babies of Down syndrome. With better future and lesser medical concerns to worry about, I am sure people would not run to get that abortion done after finding about the “extra chromosome”.

The universal truth is we all try whatever we can to make our children’s life better every day and I for once want to hope that this research brings about the changes in the symptoms that can possibly make lives of our kids easier.