Thank you for all of your prayers and support over the years for me and all of the patients who have Cystic Fibrosis (CF). My family has sent a letter since I was born to raise both awareness and financial support for this disease to find a cure. I am now in 8th grade, and am active in cheerleading, gymnastics and my church. To see me you wouldn’t know how I have to fight CF, so I would like to get a little more personal about how it affects my life.
When you turn 14, the CF Clinic at Children’s Hospital shifts to solo visits to help teenage patients prepare to transition to UAB as they become adults with CF. They teach CF patients how to become advocates for themselves and more about the disease. I was anxious before the visit because I wasn’t sure if I would know how to talk to the doctors without my parents, but it was GREAT! Everyone was so helpful and I learned a lot of really exciting things that are happening with CF research right here in Birmingham.
This year I began taking growth hormone shots. I learned that it is really important for CF patients to be at least five feet tall for their rib cage to hold adult sized lungs so they can expand to take full breaths. The medication has definitely helped - I have grown almost 4 inches this year! CF kids tend to be shorter because they don’t produce enough natural growth hormones. While this is helping me grow taller, which should help lengthen my life span, a side effect is that it can trigger CF Related Diabetes (CFRD) even earlier. I have the beginnings of CFRD, so I will be starting on insulin soon.
I had to stay in the hospital for 10 days in November because of a lung infection and intestinal blockage. It was really scary because for the first time in my life I felt like I just couldn't get a deep breath and my lungs hurt really bad. They gave me strong IV medications and lots of breathing therapies to help my lung function get better and medicines to help my GI system. It was sort of a wakeup call because unlike many CF kids, I am blessed to not need to go to the hospital very often. I am thankful that I have so many friends and family that could come visit me and keep me company.
When I was younger I didn’t worry about keeping myself healthy, but now that I’m older I realize how important it is. I always do my breathing treatments (25 min twice a day) and breathing therapies (3 a day), take all of my medicines (30 pills a day), monitor my sugar (3 meters and 1 injection), stay active and try to get enough rest, but I still worry about the next time I’ll get sick. Sometimes it’s stressful to balance all the treatments and still stay on top of my schoolwork and activities, but I am so thankful for all of the amazing medications we have now that keep me healthy most of the time.
Having CF has helped my faith grow so much. God has given me little signs that he is with me and is helping me through everything and that EVERYTHING will be okay. I don’t understand why I have this disease, but I know that God will use this for great things. CF is really tough to live with, but God is so much stronger than this and he is with me always.
Your help has been an example of true discipleship and such a blessing. My parents and I are fully aware that research for so many of my medications has been made possible because of support like yours, and these medicines are working! It’s just that CF is a really tough disease to treat. I have learned that you have to fight hard for what you want. AND I WANT TO BEAT CF! When I was a baby, our CF team shirt said “Helping CF stand for Cure Found.” We aren’t there yet, but we have come a LONG way. And I know that in my lifetime this will happen. Will you continue to help me fight?
My goal in writing this letter is to raise awareness and also raise money for the local CF Great Strides event by asking for donations to my team. My goal is $35,000 - I want to beat last year’s total of $33,000! The event will be on May 13th at Veterans Park, Hoover. You can donate by writing a check to Cystic Fibrosis Foundation and mailing to: Hagler and Brocato, LLC, PO Box 660466, Birmingham, AL 35226 or go online to my page http://fightcf.cff.org/goto/maddiehagler .
I want to thank everyone again for any donations that you send and end my letter with a family saying. “Situations don’t define us, God does.”
“Show me your ways, Lord, teach me your paths. Guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long” Psalm 25: 4-5
Join our team and help add tomorrows!
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. We walk for them. Will you join us? All we need you to do to become a member of our team is click on the "Join our Team" button. From there you can make a donation and start your fundraising.
By becoming a member of our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
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.