Meet Harley
03 July 2019
Meet Harley
Harley Littlewood, who has NF1, is an amazing 7 year-old boy. Last summer he was the latest member of his fantastic fundraising family to take up a challenge, walking a sponsored mile which raised a considerable amount for NTUK. His mum, Leanne takes up the story:
My husband, Wayne, has run 5 marathons for Nerve Tumours UK (and its predecessor, the Neuro Foundation), and Harley wanted to be like Daddy, and get a medal.
He decided to walk a mile, and so, supported by loads of friends and family, he walked the mile in Memorial Park in Coventry. The weather was awful, but that didn’t stop us – we jumped in puddles, and we even had Harley's own medal made up for him. It was such an amazing day.




Harley was diagnosed at 6 months with NF1. He has a benign inoperable brain tumour, autism, plexiform fibromas and a speech and language delay. His brain tumour means he has to take antiemetics medication to control his nausea. But he doesn’t let any of this hold him back. He is in a mainstream school, goes to Beavers, has lots of friends (even though he like to be the boss), and nothing stops him. He makes everybody smile and laugh, and in fact, he wraps everyone around his little finger.
– Harley's Mum Leanne"We have always fundraised for Nerve Tumours UK because we know how much they need to raise awareness. I am a nurse, and before Harley was diagnosed, I didn’t know anything about Neurofibromatosis. "
Wayne is going to be running his sixth marathon for Nerve Tumours UK next year, and I'm going to be running my first! We do lots of other fundraising too, and we love doing it – we know how important Nerve Tumours UK’s work is in raising awareness and providing support with the helpline and the NF nurses.
Nerve Tumours UK has been very important to us, giving us support when we really needed them. And they do that for a lot of people.
Follow Harley's example, get you and your family involved by finding your your regional fundraising event by clicking on the link below:
Filter News

Jane Frances
Here Jane Frances tells us how findings from psychological research can help parents and teachers of children with NF
Read More
Sarah’s Story
Sarah has NF1 and works full time for the NHS check out her intriguing story here
Read More
Laura’s Story
Read about Laura's experience of undergoing surgery to remove a tumour from her spine here:
Read More
Visible Difference Equality Law Research: summary of findings
Find out more about the results here:
Read More
The Galloway Family and their “amazing” four year old Ruby
Have a read about the incredibly brave young Ruby Galloway (NF1) and check out their previous and future fundraiers.
Read More
“Framing the face: History, Emotion, Transplantation” a blog from James Partridge
Find out more about the blog and what is concerns here:
Read More
A Spooktacular Halloween day for NTUK
Find out more about the wonderful fundraising event here:
Read More
Nicks Triathlon in Support of his daughter Eilidh
Find out more about Nick's Triathlon and his daughter's experiences with NF1 here:
Read More
Tom GK- Hearing Loss: The Musical
Find out more about the musical and how you can secure your ticket here
Read More