I just read an absolutely fascinating article about health care and Down Syndrome. Scientists are moving ever closer to being able to turn off the effects of the extra third copy of chromosome 21. Eventually they might even be able to prevent the disease altogether.
The new therapy promises to alleviate or eliminate some of the symptoms of the syndrome by switching off the genetic material responsible.
What makes the article fascinating? How do these quotes strike you:
- If Down syndrome were completely cured, the world would lose something from the absence of that culture.
- We’re not looking for a cure. We’re looking to help and support people with Down syndrome live healthy and productive lives …
- But ethicists fear that genetic manipulation could spell the end of the disorder …
In other words, we don’t want a cure.
I understand that relatives of people with the disease are worried that their loved ones will be forever changed by a cure. That the cure might turn off other genetic functions and come with its own peril. Particularly in the early years.
However, the reality is that someone with Down Syndrome is limited in their life’s potential. Their life is radically diminished from what it could be. Maybe they are happy but they cannot experience life fully. With modern therapy and understanding they have things better than throughout history but their intelligence is limited and their lifespan shortened. They often suffer from awful diseases.
I have friends with a Down Syndrome child and I’m eager to hear what they think about the possibility of a cure. My friend is a big, strong, athletic guy and his son will never be that. I know for a fact that they love him just as much their daughter who does not have the disease.
When I read these quotes from parents who do not want a cure, fear a cure, I certainly understand. They love their child the way they are. They fear that their child, if cured, could be forever changed, will have to suffer the trials of a full life.
Ignorance is bliss as they say. But it’s bliss with a price. A heavy price, too heavy a price.
Given a choice between going through life mentally challenged and happy or less happy but with a greater capacity to understand the good and bad that the world offers; which would you choose?
It’s like not playing the game because you might lose.
As for me, I’d rather play than sit on the sidelines. Yes, I might well lose, but the experience of life is worth it. I think everyone should have that chance. Everyone should be given the opportunity to live their life to the fullest. Maybe they will be unhappy and miserable, but maybe not.
I’m for a cure but I don’t have a Down Syndrome child. I do have a mentally challenged niece and if there was a way to cure her I would absolutely be for it.
What do you think?
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