2007 Letter
I enjoy, and always have, getting packages in the mail. Whether it was something I ordered or simply a direct marketing piece sent blindly to me. We get tons of packages and mail at our house which includes lots of bills, junk mail and the occasional(?) package from American Girl. Ironically, Deirdre our 6 year old gets more deliveries than anyone in the house. Because she has Cystic Fibrosis (CF) she receives all sorts of packages. On any given day she can expect to receive: enzymes taken each time she eats to help her digest food and absorb nutrition (she takes ~ 24 each day), Pulmozyme for her daily pulmonary (nebulizer) treatments in order to agitate the mucus in her lungs, Rhinocort daily nasal spray, CF vitamins, Prevacid to reduce the acid in her stomach and aid the digestion process, MiraLAX, or, most recently, a special drug she took for 28 days in March as she had developed Pseudomonas, a lung infection. That’s a lot of packages.
One day this April something really special arrived at the door for Deirdre. It was a good friend of ours with a donation to the CF Foundation for $270. Her 9 year old daughter recently had a birthday party and, instead of receiving presents, the girl asked all her friends to make a donation to the CF Foundation on behalf of Deirdre. Nine years old! – how special is she? We’d love to receive more deliveries like that to help Deirdre and the other 30,000 Americans with this devastating disease.
The life expectancy of those with CF is a median age of 37. We’re happy with the increases over the years but we want a cure. Deirdre was diagnosed with CF when she was two weeks old. CF is a 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. Deirdre follows a strict plan for the treatment of this disease including taking daily medications (as mentioned above) as well as receiving daily chest physiotherapy (PT) to dislodge mucus from her lungs. Deirdre has never complained about any of this as this is the only life she knows. Many people remark how healthy Deirdre looks but the reality is that this is a fatal disease with no known cure.
Her recent lung infection was treated with a relatively new drug which was developed just 10 years ago. This is the second time Deirdre had this infection and each time her lung capacity gradually decreases. After a month long treatment, and even more PT, she tested negative. Great news! Without the proper funding, a drug such as this may never have been discovered. We hate to think of the alternative. This is what donations to the CF Foundation buy: tomorrows.
Adding tomorrows is a reality. Each year the Cystic Fibrosis Foundation sponsors GREAT STRIDES: Taking Steps to Cure Cystic Fibrosis. This is their largest national fund-raiser, as it raises money to support innovative research, drug development and care programs dedicated to adding tomorrows every day to the lives of those with CF. In the past five years we/you’ve raised more than $100,000 on Deirdre’s behalf. This is unbelievable and we are forever grateful. However, we cannot stop our effort until a cure is found. We owe it to Deirdre and all the other children with CF. This year’s campaign was started with a $270 donation from a 9 year old and her friends. Help us make this a banner year for our fundraising.
Tomorrow when you open the mail or getting ready to send out a letter or bill – please send the enclosed envelope to Deirdre as this is one delivery she’ll welcome most gratefully as you may have just bought her a tomorrow. Thank you in advance for your generosity.
