-Hi! :-) My name is Leila. I am an 8 year old living with Cystic Fibrosis. Here is my story.
When I was born, I had to be taken by ambulance to a different hospital than the one I was born in. No one knew that I was born with an icky and tricky thing called Cystic Fibrosis.
When I was old enough to talk, I started calling my thing “65 roses”!
Everyday I wake up, do my puffer, do my vest, do my nebulizers, then finish off with my second puffer. I do this every morning and every night for 30 minutes. When I am sick, I have to do it 4 times a day- This is just as normal to me as brushing your teeth! My treatments keep my lungs clean and clear.
I have to be very careful, and very clean because if I get sick, I get really sick and sometimes have to stay in the hospital for a few weeks to get better.
Now, whenever I eat, I take these things called enzymes. I take 3 big, and two little for all my meals. Then, 3 big, and 1 little with small snacks. Sometimes, I need an extra one incase I have more fat. I also take a big red vitamin that has extra special vitamins just for me. My body has a hard time collecting nutrients and gaining weight!
Since I have a hard time gaining weight, I also have a button! (G-tube) Every night, I get extra nutrition and calories while I sleep. I don’t always like it, but I’m grateful because I never have to taste yucky medicine - I just get it right through my button!
Guys wanna hear about poop? Of course you don’t! I’ll skip the yucky stuff and just let you know that I struggle in that department too. Other daily medicines help me go, and clean outs are something I am very familiar with.
I have friends that also have CF. My wish is for me and my friends, and everyone living with CF to be finally free from this icky tricky disease, and all the things we have to do just to stay healthy.
It would mean a lot to me if you would join our team and help us find a cure for CF!
Thank you for taking the time to hear my story. Have a good day.
Leila
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Updated July 5th, 2023
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