This is Mylee.
Mylee is like most 14 year old girls. She stays very active in school. She plays trumpet; she’s in school band, choir, and plays defense in soccer.
Mylee ALWAYS has a smile on her face. She is goofy, she is funny, and she has a beautiful personality.
Unlike most 14 year olds , however, Mylee is battling Cystic Fibrosis.
Cystic Fibrosis (CF) is a life-shortening disease. It affects her lungs and pancreas. When it affects her lungs, it is hard for her to play the trumpet in her school band. Singing in choir, and playing soccer become difficult as well as her lungs become more and more affected by the disease.
Before participating in these activities, Mylie will use her inhaler.
“It sometimes slows me down, but most of the time, I will kick butt.
I will not be stopped because of my breathing. “
Because it has affected her pancreas,
Mylee also has CF-related diabetes. Some of Mylee’s daily struggles are making sure she is breathing ok and
keeping her blood sugars at a good number. She has to make sure she takes her pills and does her treatments to keep her lungs healthy.
She has to work harder than other kids to play her trumpet , play on the soccer team, and sing and hold the right notes in choir. But she does so without complaining.
“My daily routine is never boring! I basically wake up, check my blood sugar, take my medicine,
do my treatments, and then go to school. While at school, I take my blood sugar before eating lunch, do more school work , go home
and check my blood sugar again, eat dinner, do more treatments, take my medicine, test my blood sugar,
and then I go to bed. That’s on a good day though. “
Cystic Fibrosis won’t slow this girl down at all. She is a girly girl. She likes make up, doing her hair (currently, Mylee is sporting an awesome shade of purple which color stands for Cystic fibrosis!). She loves all things glittery, photography, and of course, hanging out with her friends.
“My friends and family really keep me going. Some people will say I have a very big
personality and that nothing is capable of stopping me”. (With this, Mylee, I can wholeheartedly agree!!!)
Mylee is one of the strongest kids I know. And I truly can call her one of my heroes. Mylee oftentimes
has to miss out on going out with friends because she has to receive treatments
or is in the hospital for lung troubles due to Cystic Fibrosis.
It is really hard for her to not be able to be with her friends. And yet, I still see smiles ….
“I hate going to the hospital. I miss out on a lot of stuff. I miss out on school, my soccer games, church, and activities with my youth group. I can’t go to sleep without doing my treatments. And I really hate that because no matter how late it is, I have to do them. I wish I didn’t have to do this stuff because I would be able to spend more time doing things I love! When my classmates find out I have CF, some of them will treat me different and treat me like I am contagious. This really hurts my feelings. ….”
I love to sing, dance, cook, and be the positive vibe in everyone’s life. When I’m positive in others’ lives, it helps me to remember that you ALWAYS have to stay positive through the good times AND the bad.
Mylee is a gift to everyone around her. Her contagious smile, bubbly personality, and amazing will and fight in her to make each day a great day, no matter what she is going through. Mylee is one of a kind. She is a fighter. And she truly amazes me through and through!
Mylee was admitted into the hospital again today. There was a lot of crackling in her lungs and her lung function went down.
Breathing is hard for her and she was grateful to be admitted. Tomorrow, they will fight CF. And I believe Mylee will win.
There needs to be a cure. No girl of 14 should have to go through this.
They are still working to try to find a cure for Cystic Fibrosis by searching for new drugs and doing clinical trials.
Please consider donating to the Cystic Fibrosis Foundation today. Kids like Mylee are fighting this battle daily.
How amazing would it be if they could find a cure next year?
Will you help join in the fight?