Saturday, November 21, 2009

Curing Down Syndrome?


This is a picture of my daughter after her new haircut--she had enough cut off to make a Locks of Love donation.

By now I am sure you have heard the news about the Mouse Study on Down Syndrome.

Actually, Dr. William Mobley spoke about this study at the National Down Syndrome Congress Conference last summer in Sacramento. Dr. Mobley gave a really clear explanation of the study and, probably because he was speaking to families, introduced the researchers who were working on the study.

The science is fascinating... The ramifications--to me anyway--are unclear.

So, will we be medicating our daughter???

Not anytime soon.

I REALLY do not believe in taking new medications--especially new medications based on new science. After all, Hormone Replacement Therapy, Fen-Phen and Thalidomide all seemed like good ideas at the time.

I will, of course, make exceptions when something is life-threatening, but a cognitive delay simply isn't.

And Alzheimers? Not an issue for another 30 years or more (and it's only a risk factor.) By then, Alzheimer's may well be cured for everyone--this study may well point the way.

So we will wait.

This may present some new and interesting opportunities, time will tell.

But there are a few things this is NOT:

**THIS IS NOT URGENT

Cancer needs a cure. Down syndrome? Not so much.

**THIS IS NOT AN EXCUSE TO ACT LIKE A JERK

One of my friends has already been berated and labelled irresponsible and negligent by another parent for expressing her belief that medicine does not hold the answers for her son.

Negligent and irresponsible for having a different point of view about a medication that does not even exist yet???

REALLY???

One woman who really wants me to medicate Jennifer won't immunize her own son...

Yet I'm not calling her names...

Rein it in, parents! LEARN from your experience of having a child with a difference. Diversity and choice are good. And, it's disrespect (far more than any medical condition)that turns a mere diagnosis into a "handicap."

**THIS IS NOT HELPING DISABILITY ACCEPTANCE

I fear that the implication that we'll just eliminate differences like disability rather than accept, adjust to or welcome them is not making the world better--for any of us.

Sigh...

For somethng truly beautiful, read this.

7 comments:

thecatsmeow said...

I think you hit it straight on with your comment that the disrespect is far more of a handicap than the physical/mental issues that might come from various conditions. I have so been there and done that... I have never quite understood the need for some people to "cure" everything; cancer, yes, heart disease, absolutely, but Down syndrome or autism? Not so fast. That's not to say there aren't problems for the people who have these latter conditions, but to me those who want a "cure" want to either eliminate an entire class of individuals (for no good reason other than their belief that this kind of existence must be horrible) or want to effectively change the essence of who these kinds of people are. If we were all perfect, life would be incredibly boring IMHO.

therextras said...

I only know of the 'mouse study' from a good friend who has a child with DS, and a nephew with DS. She has had her share of anxiety and irritation with her SIL over this issue.

You have given it a fair go here. Thank you. Barbara

Terri said...

Thanks TCM and Barbara, These new advances sometimes throw everyone for a loop. Perspective and respect make a world of difference.

Julie said...

You don't know me. I have a 7 year old daughter with DS. I love, love your response to the "curing DS article". Thanks so much for posting this!

Terri said...

Thank you, Julie! Clearly my answer won't be everyone's, but there is no reason it should be--we will all make our own decisions and that will be GOOD!

Come again, we never close! :)

starrlife said...

Love the pic and new do! You are right on the money there about true diversity! I know people cope in a variety of ways- some even go so far as to get surgery to correct "features". I personally adore those almond crescents of eyes and sweetly arched brows over the petite nose!

Terri said...

I am right there with ya, starlife!