#TeamLily’s journey to the finish line

Blog -

19-year-old Lily Goddard has cystic fibrosis (CF) and will be running her first marathon at this year’s TCS London Marathon in aid of Cystic Fibrosis Trust. 

Here, she tells us how Kaftrio is helping her reach the finish line, what it’s like managing CF alongside training and what keeps her motivated to run.

I have always loved running but never believed a marathon would be something I could achieve. Once I started Kaftrio, I decided I wanted to disprove people’s misconceptions of CF by running further than I ever have before.

I believe people with disabilities, such as CF, can achieve amazing things, and the stigma surrounding the word ‘disabled’ needs to be broken. 

I am training for the London Marathon, which happens to be the day before my 20th birthday, by increasing my miles and focusing on my breathing treatments to keep my lungs well!

I was extremely excited when I received the call saying I could participate in the marathon, and I can’t wait to make the CF community proud. 

Growing up

I was diagnosed with CF before I was born, as my older brother also has CF. It sucks that we both have CF, and while there were challenges with us both having it, such as having to keep apart when we had infections, having someone else with CF so close to me was quite comforting.

It felt nice to have someone to relate to, who I could do physio with and who understood my struggles. I didn’t feel so isolated.

Growing up, I was always relatively healthy, but my health took a dip as I reached my teenage years. My lung function worsened, and medications such as antibiotics, steroids, and IVs were no longer working for me.

A second startSelfie of Lily

Thankfully it wasn’t too long after my health worsened that Kaftrio arrived on the scene.

And it really changed my life.

I took my first Kaftrio pill at nine in the morning, and by the time I took my evening dose, I felt completely different. The instant effect it had on me was crazy.

Tackling the stigma

On the whole, exercise is directed at ‘healthy’ people who don’t have any form of disability. And with CF being a lung disease, most people assume we can’t do certain things, but that’s not true.

I have an Instagram account dedicated to my life with CF, where I share my journey with running and show people that I live a completely normal life.

The reaction I’ve had from the CF community, particularly parents of kids with CF, has been great, and it motivates me to keep going.

It would be easy for me to see CF as a barrier to running, but I’m not letting it get in my way.

Getting here

But I am also very aware of how lucky I am to have the level of fitness that I do. I am in a fortunate position where Kaftrio has worked so well for me that I can now consider running a marathon.

But CF still places a burden on my life. It is very time-consuming - trying to fit in all the medications and treatments every day can be extremely challenging, and people don’t see all the planning behind the scenes when it comes to managing CF.

A new adventureLily running

I enjoyed running before Kaftrio and had done a few half marathons, but I had to pace myself and ensure I took it easy.

Before Kaftrio, my lung function was just getting worse and worse, so I don’t know if I would have been able to consider doing a full marathon. 

Motivation and top tips

Training is going really well. It’s not long until the real thing, but I’ve managed to get in a 20-mile run, and that went well, so now I’m just getting excited for the day.

The last six miles will be draining and challenging, but family and friends are coming to cheer me on, so I hope that will spur me on until the end.

Tips for getting into exercise:

  • Find something you enjoy. I used to hate running when I was younger because it felt like a chore, but as soon as I started going for solo runs and listening to music or audiobooks, I started to love it. 
  • Try not to think of it as part of your treatment routine. Do it because it makes you feel good, not because you believe you have to. Once you find your own motivation, you will grow to enjoy it.

In the future, I plan to run more marathons in aid of Team CF  - hopefully, the Paris and New York marathons if my health allows me.

Follow Lily’s marathon journey on Instagram, or donate to her page.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives - and we won’t stop until everyone can live without limits imposed by CF. 

Life with CF test 1

Sign up to our newsletter

Get the latest news on what the Trust and its supporters are doing straight to your inbox

Your donation will make a difference:

Select amount
Select amount