There are approximately 30,000 Americans currently living with cystic fibrosis. They struggle every day just to breathe. Many die in their 20's and 30's, but some die much younger. My daughter, Reagan, is one of them. I walk for her and hope you will support me in my efforts.
Reagan was diagnosed with cystic fibrosis (CF) before she was born. After her birth, the diagnosis was confirmed through newborn screening. Cystic Fibrosis is a life shortening, genetic disease for which there is no cure. For Reagan to stay "healthy", she must do chest physical therapy twice per day for 30 minutes. With these treatments, she must do two different inhaled medicines. When she gets a cold, those treatments increase to 3-4 times per day. Since she started preschool this year, she has been sick roughly every two to three weeks and it is very difficult to weigh all of the benefits of preschool with all of the sickness. Because her CF causes her pancreas did not function properly, she had to take enzymes to help her digest her food before all meals and snacks. She also had to take special vitamins to help her absorb fats. In 2017, she became eligible for a new medicine that was supposed to slow (not stop) the progression of the disease. It was an important first step. Within 6 months of taking that medicine, we tested her pancreas and it was miraculously functioning completely normally. She no longer has to take any enzymes or a special vitamin. We also noticed for the first time this year, that her annual x-ray didn't show additional scarring.
Our hope was that we would notice other areas of improvement, but she still gets colds frequently and has had an MSSA infection since April. Because people with CF take so many antibiotics in their lifetime, many viruses become resistant to them. Therefore, the doctors are not treating the MSSA infection and will continue to monitor it.
The money that we raise in Great Strides goes toward the funding of more clinical trials to combat the problems that still exist. People are still dying very young and many end up on the lung transplant list. This is also not a cure, as the average lung transplant patient lives only 6 years post transplant. It is with this unsettling information that we focus our efforts on finding better medicines that will eventually completely stop the progression of the disease before Reagan's lungs are damaged significantly.
Walk with us, donate to the Cystic Fibrosis Foundation, send us notes of encouragement. All of these things are welcome. Just please don't ignore us. It's easy to take the good health of you or a loved one for granted until you don't have it anymore. Please join me. My hope is that Reagan will be able to live a full, long life enjoying her future children and grandchildren. I want her to imagine what the future holds for her and not whether she'll have one.
Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible. Please help us to add years to Reagan's life! Share this with anyone you think would be willing to give. Thank you so much!
Lisa, Bill, Reagan, and Rylie Moyer