2008 Letter
Anyone who knows me well is aware that I like to hear the bad news first then the good news. “I’ve got some good news and some bad news.” Stop – give me the bad news first. I never really thought of why I prefer that order. Maybe it’s so I can appreciate the good news, could be I’m a problem-solver and need a challenge, maybe I want to get the unpleasantries out of the way then focus on the positive, or simply that the bad news intrigues me more. I’m not sure.
The bad news about having our seven year old daughter Deirdre living with life threatening Cystic Fibrosis (CF) is that most of you reading this could outlive her expected median age of 37 years, the 140 pills she takes on a weekly basis and the daily nebulizing treatments along with chest physiotherapy performed by Maureen and I to dislodge mucus from her lungs in order to prevent infections. The bad news is that she’s becoming more aware of her condition and is reluctant in letting others know what she has. When prompted why, she says she doesn’t want her husband to know and worry about her. Should any seven year-old have to think that? Chances are, too, that she’ll have difficulty conceiving children (aside from that, males with CF are 100% sterile). Anyone receptive to more bad news is welcome to see it first-hand with us as we walk the halls of the CF floor at Children’s Hospital and see kids not much older than Deirdre in wheelchairs or hooked up to oxygen to aid their failing lungs – and these are the outpatients.
There’s lots to know about CF and too little space here to explain it. We’re overnight experts! CF is a hereditary disease that affects mainly the lungs and digestive system, causing progressive disability. Thick mucus production, as well as a less competent immune system, results in frequent lung infections. Diminished secretion of pancreatic enzymes is the main cause of poor growth and deficiency in fat-soluble vitamins. Most people with CF die from lung failure. There is no cure.
The good news? Yes there’s much of that, too. When Deirdre was diagnosed at birth we were told by the doctor that “it’s a good time to be born with CF.” Not sure about that – but the point was that there have been many advances in finding a cure and treatments to prolong lives. Progress, but no cure. Many of the medicines she and others take were not in existence 3-4 years ago. When she was born the average age was 32 now it’s 37. We live close to some of the best hospitals in the world which is great news as she’s given the best care possible. Her two sisters are phenomenal, and along with her mother, deserve much of the credit in keeping her out of the hospital and relatively healthy. They are her biggest supporters and are slowly learning the grim prospects for a healthy and long life. The good news, too, is that over the past six years we’ve raised more than $125,000 for Deirdre’s Team during our annual Cystic Fibrosis Foundation sponsored Great Strides walk… grab your check book if you want to help create more good news.
The Great Strides walk is the largest national fund-raiser, as it raises money to support research, drug development and care programs dedicated to adding tomorrows every day to the lives of those with CF. We cannot stop our effort until a cure is found. We owe it to Deirdre and all the other children.
It’s NEVER a good time to have Cystic Fibrosis so please give Deirdre and the other 30,000 Americans some good news by sending in as much as you can to not only prolong the quality of their lives but to find a cure.
