Dear Friends:
Our family received two really great pieces of news this week.
First we learned that, with the approval by the Governor and Council of the applicable contract, beginning on May 1, 2006 every child born in New Hampshire will be screened at birth for Cystic Fibrosis. This means that, after May 1, no New Hampshire family will ever endure what our family endured in the months after the birth of our daughter -- a failure-to-thrive baby, literally starving to death, because nobody knew she had a disease whose chief symptom can be corrected by readily available prescription medication. Jenny and I can claim to have played a small but significant role in making it happen. It may be the best thing I have ever done.
Second, the Cystic Fibrosis Foundation announced that the expected survival age for people with CF has grown to 36.8 years. I am not easily impressed, particularly by statistics, but to me this is astonishing news. To put the data in perspective: In 1980, when Frank DeFord's little girl died of CF, the life expectancy was nearing 20 years. Had I been born with CF, I likely would not have survived long enough to learn to write. Just last year, the median life expectancy hit 35.1 years.
Does an increase of 1.7 years in median predicted life expectancy over a 12 month period mean that the little CF girl in our family is going to live forever because the life expectancy is growing faster than she's getting older? Okay, maybe not. But it is very compelling evidence that the quest to overcome this genetic disease is succeeding -- and it offers us good reason to believe that everyone in our family will be dancing in the streets on the day CF is officially relegated to the list of interesting medical footnotes.
We are eager to tell you this news because it is to you that we owe our thanks for these blessings. Among the recipients of this message are tons of people who have offered their tangible support to us, in connection with the recent formation of Team Rose 66 -- our modest little foray into the world of disease-conquering walk-a-thons. (In this case it is the national "Great Strides" event of the Cystic Fibrosis Foundation. We'll be walking in Manchester NH on May 20. It's not too late to join us as walkers, or to offer a pledge of support. Visit
www.cff.org/great_strides/dsp_donationPage.cfm?registeringwalkid=4323&idUser=117768 if it would be a source of pleasure to you.) And literally every person we know has offered us some kind of help since we found out we were a CF family four years ago. Keep it up -- and let us know when we can help you, as well as when you have good news to share.