Hi family & friends! Thank you for joining us in our fight against cystic fibrosis and sharing our goal for More Tomorrows for Reilly. We are so grateful and blessed to have so many people come together and support us.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short.
Last year was our first year walking with The Palm Beach Chapter. We are thrilled to be walking with them again. Reilly has adjusted well to his first year in FL. He loves the beach, exploring, riding his bike and being outside as much as possible. Thanks to a grant from The Cystic Fibrosis Lifestyle Foundation he started taking private swim lessons. He really is a fish! He started a new medication, Orkambi. This drug is now approved for patients 2-6 years of age and would not be possible without your support. Thank you!
Reilly takes numerous steps each month and day to stay healthy:
700-how many pills Reilly take’s every month. He takes these before each meal in order to give his body the ability to absorb fat and nutrients from food.
47-average life expectancy for someone who has cystic fibrosis
40-how many minutes a day are devoted to breathing treatments. (80 minutes/day when sick.)
40-how many minutes a day are devoted to Airway Clearance Treatments when healthy. (80 minutes when sick.)
9-how many medications and supplements he is on to help his body function
3-years old, how old Reilly is
Just because he doesn't display more direct symptoms doesn't mean that CF isn't making its mark on him. Cystic fibrosis is quiet and stealthy.
We hope you can join us on May 18th! If you are not in the South, FL area please check out the Charlotte, NC Great Strides or Leonardtown, MD!
Thank you all so much!