The month of May will always hold a special place in our hearts. In 2016, May brought us much joy as well as unexpected challenges. Wesley Jerome was born on May 6th; a little more than two weeks early. As we started to adjust to having two kids under two in the house, life threw us an unexpected curveball. Only one week after his birth we learned that Wesley could possibly have Cystic Fibrosis. Our hearts sunk when we learned of this possibility and every day we overwhelmed ourselves with information on symptoms from “Dr. Google”. A week later, our fears were confirmed through another test when the doctor told us he was positive for Cystic Fibrosis.
Cystic Fibrosis (CF) is a lifelong disease that affects the lungs and digestive system. Until CF impacted us directly, we did not know much about this illness. Since the diagnosis, we have been doing more research and learning whatever we can to help Wesley have the best life possible. We’re hoping that by sharing this information we can bring more awareness to CF so we can battle this disease not only for Wesley but for others. Please watch the Wesley's Warriors Video for a glimpse into his daily regime and the superhero we admire each day!
The Cystic Fibrosis Foundation has been the driving force behind advancements in research and medical treatments for CF. The quality of life has been greatly enhanced because of this work and it will only get better. We have faith that through their efforts, a cure will be found. What this means for us and our family is that we will have a new normal as we continue to adjust to this new lifestyle and all we ask of you is your continued love, support, and prayers. Wesley will be a fighter. He will be strong. He will LIVE. Watch out world, his life is about to take flight.
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.