George & Leo’s NF1 Story

Our 2 year old son Leo was diagnosed with NF1 in January 2025. As a family we had never heard of NF1. We were devastated and lost. We had no information on this condition. 

There were questions and anger if I'm being honest, why our son? He's so young, and being born with Talipes, we thought he'd already faced so many obstacles in the early stages of his life. Now with the help and support of Nerve Tumours UK, we've been given invaluable information and knowledge on Leo’s journey living with NF1. 

Karen at the charity was my mum's first contact, she was so very helpful; talking us through the diagnosis and then putting us in contact with specialist nurses Rebecca and Carolyn. Both of whom were so supportive and caring in our time of uncertainty when we first found out about Leo’s diagnosis. They answered every question we had (so many questions), which was invaluable to us, and helped us move forward on our NF journey.

In March, Leo’s MRI scan detected a tumour behind his eye, an optic pathway glioma. This is being monitored with 3 monthly MRI scans. Hopefully it won’t grow and cause any problems.

Leo is our mischievous, yet loving ray of sunshine. Always a little character and never fails to put a smile on everyone’s face. Nerve Tumours UK Charity has been a great support to us all.

Through Leo’s diagnosis, it has brought many uncertainties into all of our lives as a family. This has sparked a deep resolve in us all to try and help make a difference. Our decision to fundraise for Nerve Tumours UK comes from a place of wanting to create hope; not just for Leo, but for all those who are living with or affected by NF.

We created a Just Giving page for Nerve Tumours UK, and within a week, family and friends had raised £1500, and it's increasing day by day. We are so deeply grateful to all of our family and friends who have donated to help those living with and affected by NF. Your kindness is making a lasting impact, and is a step closer to raising awareness, improving lives and making progress towards finding life changing treatments and ultimately a cure.

Everyone’s contributions is an integral part of this journey. Thank you again for your incredible generosity. 

Every May at my work, Rolls Royce, we do a fundraiser charity event.  After sharing Leo’s story and putting forward Nerve Tumours UK as my chosen charity, I was overwhelmed that all of my work mates voted for Nerve Tumours UK.

The fundraiser was a 24 hour cycle ride. The target was to cycle 180 miles from our Derby site to the BAE Barrow site. Collectively we all achieved 230 miles! Everyone chose a time slot on their work shift to cycle as many miles in an hour as they could. I would personally like to thank everyone who took part in the event for such a worthy cause. 

Fundraising through my work has also raised nearly £700 in donations and that's increasing day by day, which is incredible.  In a couple of weeks a sports shirt day is being organised where colleagues can wear their preferred sports team shirt for a donation. 

I’m also aiming to do a half marathon at the end of September for NF1 awareness, which is Leo's birthday, so that will be a very special day too.