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Volunteer Advocate
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Ella’s Story

Hi, my name is Ella. I live in Regina and I am eight years old. I have two little sisters. We homeschool. Mom is our teacher and dad is our principal, but he has another job that he goes to during the day. This year I’ve been doing swimming lessons, dance lessons, taekwondo, rock climbing and riding my bike in the summer.

My parents found out that I have CF when I was 23 days old. CF affects my lungs and my digestion.  There are other challenges too, but those are the toughest ones for me. I have to do a lot of breathing treatments and take a lot of pills to keep my body healthy. When I was three years old, I had a surgery to put a feeding tube, a g-tube, in my tummy. I have a really hard time staying a healthy weight, and so every day, I get a “milkshake”. That’s our silly word for formula. That gives me an extra 1000 calories every day, so I can grow and stay healthy. I have to eat a lot of regular food during the day too. That’s actually harder work than it sounds. Doing all of my breathing treatments, physiotherapy, taking medicine and doing my feeding tube takes between two to three hours every day, and that’s when I’m healthy. When I am sick, it means more work. That’s the toughest part for me right now. I would rather be playing, or getting other things done, so I could go and play.

My parents are trying to figure out a way to get me Orkambi. It’s a drug that will help me a lot with my CF. People can get it in Canada, if they have a way to pay for it. It is super expensive.

Having CF is really hard. I hope we find a cure. There’s lots of research looking for a cure and for better medicines to help people with CF. My dad and I do a fundraiser for CF every year. It’s called “Coffee & A Rose”. $5 for a coffee and a rose. We also help with the CF walk fundraiser called, Walk To Make Cystic Fibrosis History each year. It all helps.

Thanks for reading my story.

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