2006 Letter
Kids are always asking for something… it starts with food and water when they’re born and they never seem content from that point on! Our three young girls, seriously, don’t ask for much and are rather happy with what they have considering the very materialistic society in which they live. Her oldest sister (9) is happiest riding her bike or huddled on the couch reading a book. Her other sister (7) is quite happy with anything involving the cocoa bean. Deirdre (5) loves to ride her bike and play pretend grownup. we can buy bikes, books and lots of chocolate but we need your help to buy Deirdre “time” so some day she can be a real grownup. If Deirdre could grasp the reality of having Cystic Fibrosis she’d most likely and humbly ask, “Please buy me time.”
Deirdre was diagnosed with Cystic Fibrosis (CF) when she was two weeks old. CF is an inherited genetic disease affecting the glands that produce mucus, tears, sweat, saliva and digestive juices. The most “serious” threat is respiratory failure caused by a thick mucus buildup that harbors bacteria which causes lung infections. 90% of all CF deaths are caused by chronic lung disease. The life expectancy of those with CF is a median age of 35 years old. Deirdre follows a strict regimen for the treatment of this disease including taking medications such as antibiotics to fight respiratory infections, inhalation therapy, enzymes to aid in her food digestion, and vitamins to improve her general health. She takes a total of 18 – 20 pills a day. On top of all this, we perform daily chest physiotherapy on her to dislodge mucus from her small lungs. Deirdre, and the other 30,000 Americans with CF, are looking for more time each day as researchers get closer to finding a cure. Money can buy them time: Money is Time.
Adding time to these precious lives is a reality, too. While the life expectancy is now 35, just five years ago it was 32 years old. Wow! If you’ve contributed to our cause in the past then you’ve helped add 3 years to the life’s of those with CF. Feels pretty good, doesn’t it? Unfortunately, however, one life is lost each day to CF. More years can be added because more time means new treatments and eventually a cure. Many of the drugs Deirdre takes were part of clinical trials years ago, and now they help keep her healthy today. We can’t stop until there is a cure.
Good friends of ours recently made a very generous donation to kick-off this year’s campaign and I had the opportunity to see one of them at a function and thank her. She said, “No need to thank us, just invite us to the party you’ll have when they find a cure.” See you soon?
