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It is time once again for Team Penelope to (virtually) ride in the Cystic Fibrosis Cycle for Life, this Saturday, June 12th! The downside of a virtual ride is that we don't get to build camaraderie with other CF fighters over 25 grueling miles. The upside is that since we don't have to ride 25 grueling miles, we can bring the whole family! If you are interested in riding with us either in the flesh or in spirit, you can join Team Penelope at http://fightcf.cff.org/goto/teampenelope. If you would like to make a donation to help fight CF, extend Penelope's life, and touch the lives of tens of thousands of families dealing with CF around the world, please visit http://fightcf.cff.org/goto/penelope.
If there is one thing that having a child with cystic fibrosis has in common with living through a catastrophic global pandemic, it's that both events make me realize how lucky I am. So rather than give you the usual details about CF and how it affects Penelope's life, here is a list of things for which I am grateful:
1. Julie and I were screened as carriers of CF before Penelope was born, so that she was able to start getting treatment on day one.
2. We have the health insurance and financial resources to afford the best available medicines, treatments, and nutritional supplements for Penelope.
3. Penelope is a joyful girl who never complains about how unfair it is that she has to endure endless pokes, pills, breathing treatments, doctor's appointments, and overprotective parents nagging her. Her resilience and enthusiasm never cease to amaze me.
4. She has only been admitted to the hospital one time. By making it nearly nine years with only one week on IV antibiotics, she is by far beating the odds.
5. All of the incredible medical technology that is available today, which has pushed the life expectancy of children born with CF past 40!! For comparison's sake, the life expectancy of a child born with CF left untreated is about two years.
6. The Cystic Fibrosis Foundation, which is funding research into medicines and treatments that will keep pushing that life expectancy up, up, and up!
7. ♥ Our loving network of friends and family, who have given Penelope so much support throughout her life, and who I know will always be there for her and for our family. ♥
With all of our hearts, thank you for all you have done for us,
Matt & Julie