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It's that time of year again! Please join us in helping find a cure for Cystic Fibrosis by supporting the 2019 Cycle for Life. The ride has a new location this year, Petaluma California, but the same goal of ending CF. This disease threatens the lives of approximately 30,000 people in the US, including our daughter Penelope.
This past year has been quite eventful for Penelope! There were many highlights:
- She went to kindergarten!
- Her baby sister Callista was born.
- She started on an insulin pump, which has done wonders to help manager her CF-related diabetes.
- She started Orkambi – this is an exiting new medication that was funded in development by the Cystic Fibrosis Foundation. It’s the first that attempts to treat the underlying problem in CF.
This year also marked a milestone in our family – it was the first time Penelope was admitted to the hospital. The cold and flu season was bad this year, and on top of that Penelope developed pneumonia. The infection caused her lung function to drop below 60% of normal so her doctors decided to bring her in to receive IV antibiotics and other treatments. As anyone who has met Penelope might expect, she handled the situation with her usual cheer and courage. She spent her time playing video games, racing down the halls with Walter, painting decorations for her room, and charming the medical staff. She was in for a week, with another week at home of intensive antibiotic therapy and extra resperatory therapy.
Overall, things went well, but this was a very scary reminder that everything Penelope does to fight this disease - two hours of breathing treatments and a dozen pills per day, plus more of both if she's sick - is not a perfect defense. We are slowing but not stopping the damage CF is doing to her body. So now we are more motivated than ever to find a cure for CF once and for all.
How can you help? I'm glad you asked! You can make a donation, or even better, sign up to join Team Penelope for the ride at this page. Every dollar we raise will be put to great use by the Cystic Fibrosis Foundation to find a cure that puts Cystic Fibrosis behind us and saves Penelope's life.
Join us in the fight today!