10 mile walk for Lily
28 July 2025
My name is Claire, and I work in a local nursery where little Lily, a bright and cheeky child, attends.
At Christmas time, Lily was diagnosed with Neurofibromatosis Type 1 (NF1).
Lily continues to attend nursery, and her condition doesn’t seem to bother her in the slightest - she remains her cheerful, resilient self. She wears a splint every day to support her ankle and leg, which she adapts to with ease. Recently, Lily underwent surgery to debulk the tumour behind her eye, and we all wish her a smooth and speedy recovery.
The idea to do a walk in support of Neurofibromatosis Type 1 (NF1) came to me during a special day at our nursery, where we all wore blue to take part in 'Shine a Light for NF 2025'.
This was organized with the support of Lily’s mum Kayleigh, pictured here with her daughters Jessica and Lily.
In April of both last year and this year, I completed a challenging 25-mile walk along the coastal paths of Dartmouth in support of Brain Trust - a charity supporting people affected by brain tumours. This cause is very close to my heart, as my auntie bravely fought a brain tumour for five years, before sadly losing her battle.
Now, I want to do even more. I’m setting out to raise awareness for NF1 and to support Lily and others like her who are on this journey. By doing this, I hope to not only honour Lily’s courage but also to stand with her family and others facing similar challenges.
After thinking it through, I spoke to the nursery team to see who might be interested in joining me. The idea of a 10-mile walk came from a personal experience: Back in 2013, I completed a 10-mile walk there and back (totalling 20 miles) after being diagnosed with Type 1 diabetes, at the age of 19 in 2009. That walk was a turning point for me - it reminded me that I could still challenge myself and keep going, no matter what.
Now, years later, I’m using that same determination to walk in support of Lily and others living with NF1. With the encouragement of the team and support from Lily’s family, we hope to raise awareness and make a difference together.
In total, 17 of us took part in the walk — including members of the nursery team, Lily’s mum and her family, as well as friends from our wider community.
It was heartwarming to see so many people come together in support of such an important cause.
I asked my mum to help plan the route, and she kindly led and guided us all the way to Henley-on-Thames. Her support meant a lot, and it made the day even more special.
We began our walk at Palmer Park in Reading and made our way to Henley-on-Thames along the river.
Within the first mile, the rain caught us - but thankfully, the sun soon came out and stayed with us for the rest of the journey, lifting our spirits and reminding us why we were doing this.
At one point, we faced a challenging hill, but we encouraged and supported one another every step of the way - just as we will continue to support Lily and her family on their journey with NF1.
It was a powerful moment of togetherness, strength, and shared purpose.
As we approached the end of our 10-mile walk, I could see the effort it had taken on some of the walkers — but with a final burst of encouragement and support, we all pushed through that last stretch together. Turning the final corner and knowing we had completed the walk was an incredible feeling and a huge achievement for everyone involved.
We proudly collected our medals - which I had arranged ahead of time, and they were handed out by our small but wonderful support group who had come along to cheer us on.
Claire & her mum receive their medals, handed out by her dad
It was a special moment, made even more powerful by the sea of blue NF1 T-shirts we were all wearing, helping to spread awareness and shine a light on Neurofibromatosis Type 1.
Thank you so much for reading and supporting our journey — for Lily, and for everyone facing NF1.
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