Friday, July 08, 2005

So There

Here's a copy of the letter I sent to the March of Dimes, so you can see there is more to me than just Fuck You.

To Whom It May Concern,

I am the mother of a child with arthrogryposis multiplex congenita. I
recently came across an news article written by a Reuters reporter that quoted Richard Leavitt, your director of science information, regarding a
boy born in Peru with arthrogryposis. "It's very rare that all four limbs
should be affected,", is the quote in the article, which appears to be the
basis for the idea that this is a newsworthy story. Furthermore, the
reporter, Robin Emmott, goes on to say the child has been "dubbed the
lobster baby" because of his congenital condition, though there was no
indication of exactly who came up with that name.

I believe that what Mr. Leavitt was referring to was the fact that amniotic
banding rarely involves all four limbs, which is what appears to have
happened in this case, while as I am sure that he is aware, arthrogryposis
is most commonly found in all four limbs. I furthermore believe that he
would not support his statements being the basis of a news story using such
a derogatory nickname. Nowhere in any research that I have done have I come
across an reference to this nickname, and it appears to be either an
invention of the reporter or a local nickname for the child. This child's
father is already refusing to acknowledge him, according to the story, and
the headline and story as written only help reinforce his decision, as it
presents the child as if he were a sideshow exhibit.

I respectfully request that Mr. Leavitt or someone from your organization
contact Reuters and this reporter and protest the inaccuracies and
sensationalist tone of the article. It has been disseminated to several
other major news organizations. I can't imagine what some child or parent
searching for information about this condition will feel when they run
across this story. I have had seventeen months to get used to the idea that
my child has a rare disabling condition, and this was a shocking and
humiliating surprise. I have already written Reuters, and have received no
response. I will be writing them again, asking for either an amendment or a
retraction, as well as an apology. The article in question can be found at, in their science section for July 1, 2005. I am not
including the direct URL because it is very long, but would be happy to if
necessary. I thank you for your consideration in this matter.


JenEx said...

You rock. Seriously.

Anonymous said...

Major kudos to you for the respectful tone. I wouldn't have been able to do that...


mommyguilt said...

You GO girl! Very polite, yet to the point way of saying that. I would have had a very difficult time not sending them and Reuters a big F.U.