Conlee was born with Cystic Fibrosis (CF), a chronic, life-shortening disease that affects many parts of the body such as the lungs, sinuses, and digestive system. He was diagnosed at 2 weeks of age to our complete surprise. We spent the first 2.5 years of his life struggling to help him eat more and gain weight since he needs at least twice the amount of calories as his healthy friends. He was only getting about 1/2 the nutrition that he needed at this time and was vomiting multiple times a day. We were so stressed and worried for him so we decided to have a feeding tube placed in September 2017 which helped tremendously. He was finally thriving and growing and there was no more stress when it came to meals. He was still getting sick though and had such a negative view of food. At the age of (almost) 7, he is finally learning to enjoy food and not looking at eating as a bad thing.
In July of last year, a new medicine for Conlee's CF mutations got approved for ages 6-11 years. This medicine is called Trikafta and it is able to treat the underlying cause of CF jrather than treating the symptoms which basically means it helps to thin the thick mucus in his body which helps makes his body function much better. It helps his sinuses, lungs, and even his digestive tract work better! He still has CF though which means he still has to take over 30 pills a day and spend 1.5-2.5 hours a day doing chest therapy and aerosol treatments to make sure his lungs stay clear.
Before Trikafta, Conlee had undergone about 10 surgeries. We are extremely hopeful that he will not need to undergo many surgeries moving forward thanks to this groundbreaking medication. The problem is that although this medicine is an AMAZING stepping stone for the CF community, there are still many patients who are not able to take this medication because it does not work on their CF-causing mutations. So we will not stop this fight until everyone has a medication to help them and ultimately, one day, a cure so that nobody else has to go through all of this!
Please consider donating to our fundraiser this year to help us make CF stand for CURE FOUND!!
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.