30 Miles in September – and maybe more!

This September, I’m walking 30 miles (and who knows, I might even go beyond that!) for myself, my fellow CF’ers, and in memory of those we’ve lost along the way.

What is Cystic Fibrosis?

Cystic fibrosis (CF) is a lifelong, debilitating condition that affects 1 in every 2,500 babies born in the UK. No two journeys with CF are the same — and mine has been… well, a little “different.”

My Story

I wasn’t diagnosed until I was 12 years old — after far too many operations, endless medications, and strange treatments.

At 16, I was moved to an adult hospital. To my shock, they stopped all my medication and began a series of intense, invasive investigations to find out if I even had CF at all. My life — and my family’s — was thrown into turmoil yet again.

Months later, the verdict came in: yes, I do have CF… but my genetic mutation was so rare it had never been documented before.

I’ve lived with unusual symptoms that can’t always be directly pinned on CF, which meant more medication, more treatment plans… but still, no clear answers.

A New Chapter

As I’ve grown older, I’ve kept asking questions — and slowly, more answers have emerged. In recent years, I’ve faced three bouts of COVID, and I’ve also been hearing more and more about Kaftrio — a breakthrough drug that can alter the genetic makeup and disable the faulty part of the DNA responsible for CF.

After lots of research, long conversations with my family and friends, and a lot of soul-searching, I’ve decided to try it.

For many CF’ers, this wonder drug arrived too late — including for my closest friend. That’s why I want to do something, however small, to raise awareness and funds.

This is my first charity event — but hopefully not my last!

Every step I take this September is for the fighters, the survivors, and those we’ve lost.