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.
Reilly is almost 7 years old. He is active in sports, going to the beach, creating art, seeing his friends, and he told me he wants to be a Paleontologist when he grows up.
Update: This past August to mid December Reilly started experiencing painful tongue lesions. It was hard to see him in such pain and not have a clear answer on why this kept occuring. He met with his CF team, ENT, G.I. team, Infectious Disease, Rheumatology, Allergy and Disease and had countless blood draws. There is still not a clear answer on why this occured. During this time he stopped taking the drug, Trikafta. The FDA approved this drug for children 6 -11 years of age last June. Chris and I were thrilled. This drug is NOT A CURE but research has shown amazing benefits to starting this drug at a young age. We hope he can start back on the medication sometime this year. He had his first hospital stay on October 22nd. He was in such pain with his tongue and fever he had to be admitted. Reilly loved his stay at the hospital ( minus the blood draw ). He was thrilled to eat all the Jell-O he wanted along with cow's milk and Frosted Flakes!
Reilly takes numerous steps each month and day to stay healthy:
750-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.
50-average life expectancy for someone who has cystic fibrosis
60-how many minutes a day are devoted to breathing treatments. (120 minutes/day when sick.)
60-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
6.5-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 14! Reilly is excited to be with his friends and family :)
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To help minimize the risk of COVID-19, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
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For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Please be advised certain localities and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you are feeling ill or have been recently exposed to COVID-19.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.