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.
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