A Well Written Article and a Babbling Blogger

This article is written by a father who lost a child to Trisomy 18 in 2005, and also happens to be a reporter for the paper.

I was struggling with exactly what to write about the last article I shared, and I am glad I didn't spend too much time on that exercise. My main point was that I wanted people to see a perspective other than my own on the subject. That article was mostly about hospice care, and at points a bit slanted toward religion, but it did a great job of telling the story and letting the reader see into the lives of the family. The video was fantastic, because it was almost entirely about the people.

This article is right on the money, mostly because it's written entirely by someone who has been there. I feel like I know this author, through the emotions he articulates, and I can't even relate to his ultimate grief.

Basically what I want everyone to see is how lucky we are that Molly is doing as well as she is - I celebrate her triumphs in this space with news like monthly birthdays and saliva bubble tricks; and I share her pitfalls in terms of high fevers and regurgitated formula - but at the same time we have to be sure to keep it all in perspective. This is a serious condition, with one in 3,000 odds, and no treatment programs. We've been fortunate to find doctors who are willing and able to perform the surgeries she needs, and provide the care she deserves, but this is not always a luxury people are given. Often people are told, "Enjoy the time you have. Keep her comfortable."

If baby steps count for anything there have now been two articles published in the last week, in newspapers that circulate to over two million people, discussing a condition that I had never in my life even heard of before March 13, 2006. Hopefully it helps raise awareness. Perhaps even get some more people to join the dedicated few who have been working feverishly behind the scenes to support those one in 3,000 and find the data needed to make it more like one in 30,000.