Did you know that Cystic Fibrosis gets ZERO government funding? The only hope for a cure comes directly from donations. Please read on to learn a bit about my nephew and his fight and consider donating through our team’s link below.
750 - How many pills Reilly takes every month, 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 daily to help his body function. 6.5 - How old Reilly is.
On 5/21/22, I will be walking in Great Strides Atlanta for none other then my nephew Reilly. I am so SO excited that after being done virtually the past 2 years, I can finally walk in person with everyone with the same goal - to make CF stand for Cure Found. Most of you know our story, my precious nephew was diagnosed with Cystic Fibrosis 6 years ago at 28 days old. Our lives were forever changed but even through all the bad there has been so much good. Reilly has made us stronger and more united and we will never stop fighting for him.
Reilly is almost 7 years old. He loves adventuring and being outside. He plays sports, enjoys creating art and going to the beach. He recently decided he wants to be a Paleontologist when he grows up!
August to mid December last year, Reilly began 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 had to stop taking the drug, Trikafta. The FDA finally approved this drug for children 6 -11 last June and we 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 draws). He was thrilled to eat all the Jell-O he wanted! he maintains a joyful spirit in spite of all his challenges.
Thank you so much for considering donating to help find a cure for Reilly and all the other kids affected by this disease!!
“It's a beautiful thing to have lungs that allow you to breathe air and legs that allow you to climb mountains, and it's a shame that sometimes we don't realize that that's enough.”our team and help us get one step closer to a cure for cystic fibrosis – a rare, genetic, life-shortening disease that makes it difficult to breathe.
With supporters like you by our side, the Cystic Fibrosis Foundation continues to lead the way in the fight against CF, fueling extraordinary medical and scientific progress. The life expectancy of someone born with CF has doubled in the last 30 years. Despite this progress, many people with CF do not benefit from existing therapies either because their disease is too advanced or because their specific genetic mutations will not respond. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day in the face of this devasting disease.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. 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 minimize the risk of COVID-19 infection, 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.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
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.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
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.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
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 test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.