Hearing your newborn daughter has a life threatening disease at just 12 days old will break any new parents hearts. Every emotion runs through your mind from wanting to know why and how could this happen to what does having Cystic Fibrosis mean. Raelynn went through the panel of tests and at just over a week old was diagnosed with Cystic Fibrosis. Her parents thought, how are we going to juggle all these doctor appointments, treatments, and medications? How will we know we are taking all precautions neccesary and providing her with the correct medications? But as any parent can understand, we knew we would do anything to make sure she had everything she needed. Raelynn's Grandmother gave us some wise advice: that over time, this would become our new normal.
From that day on her Dad and Mom have given her daily physical therapy treatments, broken thousands of her digestive enzymes capsules open at each meal, have worried at each cough and runny nose, and battle with insurance coverage. Now have the added worry of being in grade school full time and being around kids that can make her sick.
Raelynn is now 7 1/2 and it not letting CF stop her from anything!! She is lover of all animals and wants to be a vet when she grows up. She is alway on the go and enjoys summer most of all. Spending the days playing in the pool and riding around on the quad. Last year she joined the cheer team and has a high kick like I haven't seen before. Raelynn has a magic that can make your day and a smile that is contagious. She is the kind of girl whose light does not have an off switch!
Join the fight and walk alongside not only Raelynn but all of the strong fighters and you will see their magic and empowerment for yourself!!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. I run for them and hope you will support me in my efforts.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!
To all of the supporters and the never ending prayers for the health of Raelynn a "thank you" does not seem to even cover it but know that it comes from the bottom of everyone's heart that suffers from Cystic Fibrosis. Without the contributions and support, research and growth would not be able to happen.
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.