Thursday, April 16, 2009

Do You Support the March of Dimes?

If you have a child with Down syndrome, do you support the March of Dimes?

I used to always believe that the March of Dimes was a wonderful organization that made huge advances in helping prevent infant loss and treat preterm babies. I whole-heartedly supported them and added my change to collection jars.

A couple of years ago, some one pointed out this statement to me.
Is the March of Dimes conducting research on Down syndrome?

Some March of Dimes grantees are investigating why errors in chromosome division occur, in the hope of someday preventing Down syndrome and other birth defects caused by abnormalities in the number or structure of chromosomes. Other grantees are investigating the role of specific genes in causing the brain abnormalities associated with Down syndrome, with the goal of treating the mental retardation associated with the disorder. An international team of scientists has mapped all the genes of chromosome 21. This information eventually may pave the way for treatment of many features of this disorder.

"Hope of someday preventing Down syndrome."

That statement causes me to stop and ponder. Is this the research funding I want to support? An organization that thinks the best way to help those with Down syndrome is to make sure they don't exist? I'm not comfortable with that. I accept my child for who he is and Down syndrome is part of who he is. I do not wish that people with Down syndrome did not exist. Do I wish his life was easier sometimes? Sure, I wish every one's life was easier at times.

I also wish the March of Dimes would fund research that improves the life of those with Down syndrome by addressing issues they face not by addressing why they are created.

I wish I could support the March of Dimes for the good that they do in other areas, but I just can't. I don't want to see that $2 paper shoe that reads "Donated in honor of Sean Minner" to be used to make sure that others are not born like him.


RK said...

Deborah, I have been talking to a few people about this just recently, and I keep meaning to post about it. I'll get on that tonight, thanks for the reminder.

The thing that gets me is the banners that are everywhere. "One day all babies will be born healthy." It sounds nice, who wouldn't want healthy babies. But that's not how nature works, and it is upsetting that beneath this statement is the idea, backed by more than a few quotes from MOD, that they are interested in truly preventing these births...that means what it says. Not bringing these babies to birth, at least until they find a way to alter all the chromosomes or stop the trisomy at conception. I do really find that upsetting. Why do so many seem to think the world would be better without them? Why is it that DS means unhealthy to "everyone" when it is just not so. Even before I had Braska, I wouldn't have believed people would think such a thing.

Sorry to hijack, but it's been on my mind.

Lovin Mama said...

That MOD statement was very bleak and depressing. I have given them money, just last month and I even wrote Goldie's name on the card! But, more recently I was on their website and read the statement "one day... all babies will be born healthy" and I thought that isn't true. unless they are never born. Goldie may have delays and low vision, but she IS healthy.

Lisa said...

I didn't know this. Thanks for pointing this out Deborah. In all honesty, I'm pretty wary about donating to any charities, because I'm generally cynical and suspicious and I don't like not knowing EXACTLY where my donation is going.

Karen said...

I used to say, with each pregnancy, that it didn't matter what gender the baby was as long as it's healthy. After Micah I've learned that even an unhealthy baby is welcome. And I wouldn't change my "defective" boy for a "normal" one even if I could.

Monica @ Monkey Musings said...

I agree w/ you. We don't support March of Dimes because, while I think they probably do some good things, I don't like the undertones of this organization and other organizations they support or are supported by that want to eliminate babies diagnosed with Down syndrome after their conceived. That's not how to help people with Ds! My son is healthy as a bear, too. He just doesn't meet society's idea of the perfect child. But he's perfect for our family!

Hector and Jennifer Varanini Sanchez said...

I really didn't know this and I'm devastated by the verbage they are using.

Tricia said...

Good information that I didn't know. Thank you for sharing. Adds to my pile of questions for sure!

Cindy said...

Oh, wow. I didn't know. Thank you for this post too!!