My Journal - Week 24 (09Feb10)

Controversy vs. Cure  - Should Down syndrome be cured?

I am caught between views as I read an intersting article about a theoretical and experimental cure for Down syndrome.  Now, understand there is no cure perse but the idea is running rampant and the controversy is causing some serious debates.  At some point, this idea will become a reality.  Testing is already being considered.  So, the article covers two sides more or less.  In a nutshell;

1.  It is a wonderful idea - it is meant to aid the cognitive development of a younger child so that his or her future development is broadened, never meaning to take away who that person is.
2.  It is a horrible idea - it takes away from the person as a whole, it changes who these (with Ds) people are, and society is trying to "abolish" or "erase" the Ds from people or is just outwardly proving nonacceptance of anyone with Ds. 

While I agree with the feelings and ideas that both sides are saying, there is something that I do not agree with.  No matter what my personal views about Ds are, I would never propose or suggest that someone else not make a certain decision to consider it (should that happen).  The article clearly states that the treatment, should it become a reality, is only for certain people, situations and circumstances.  It is not meant to be a catch all for everyone who has Ds.  The way I see it is, if someone felt that the treatment was beneficial for someone's development, why should that be a problem?  I don't think anyone who would consider the treatment would do so because they are trying to inwardly change their child to be or become someone they are not.  I think that (hopefully) those that consider it do so with the belief and idea that it would aid in their early intervention, not inhibit it.  Where do we draw the line by attempting to help our children to attain their full potential?  But I do agree, it should not be done at the cost of changing our children or their personalities.  Would we be against it if it were additionally able to save a childs life?  Somehow I can't see or understand someone deciding that dying is better than a cure.... (Note - the article does not discuss the ability to save lives, I am just using an analogy.)

This is indeed a touchy subject.  I made a personal decision to love and accept Hunter no matter how he develops, what his limitations are or who he eventually choses to be.  If there is never to be a "cure" then so be it.  If there is no more "early intervention" so be it.  He is my son, and I will love him, support him and cherish him until the day I die.  So the way I see it, if it happens to become a reality, if even we are eligible, only then will we consider it.  Until then, I wont even worry my head over it.  I currently am much too busy worrying about how to never get peed in the face again!

Out of curiosity, how do you feel about it?  I have made a poll for you to decide.  (I would like to collect these statistics for my book.)  Your vote is confidential.


  1. Why I would do it is not to change the child's personality and sure I would accept a child however he/she is given to me but recognizing the world we live in and that nurturing caregivers such as parents are not likely to be around to tend to their needs in a loving and caring way, I would like to give a child whatever opportunities available that would allow him/her to live an independent life and experience whatever challenges they aspire to try or achieve.

    One of my Mother's cousins had a DS son back in Guyana. As a child I knew him although he was quite a bit older than the rest of us. Unfortunately he passed away at the age of 21. One of my recollections of him was that at around 16 years of age, he still had difficulty feeding himself and could not dress himself. Now I know that not all DS children are that dependent (actually he became more dependent as he grew older). Anyway, had an opportunity been available at the time, I am positive that his parents would have chosen to take advantage of it, if only to help their son in realizing a greater potential of independence.

    What would we do if our child was born blind or deaf and had the opportunity to see and hear? Would we not want him/her to experience the sight of flowers, a blue sky, stars on a dark night, snow on the ground or hear a songbird, the sound of footsteps in the woods, the majesty of a waterfall, not to mention the safety factor of being able to see and hear the traffic when venturing outdoors.


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