Helpline 07939 046 030

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.

"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. "

– Harley's Mum Leanne

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

Filter by Date

Kathryn’s Story

Have a read of Kathryn's incredibly honest journey with NF2 here:

Read More

Family Lives Charity

Find out more about the charity that is dedicated to supporting those in all aspects of family life

Read More

All Aboard the Blatchington Branch Fundraiser for NTUK!

Find out more about the miniature railway that has raised money for NTUK

Read More

Participant Experiences of the 100,000 Genomes Project

Read more about participant's experiences of partaking in the study that sequenced 100,000 genomes from around 85,000 people

Read More

Meet our ASICS London 10k runners

Good luck to all our runners taking part in the British ASICS 10K this Sunday!

Read More

Quantitative MRI Application being developed to help prevent vision loss in NF1 patients

Find out more about the technology being developed and how it can be used to prevent/decline vision loss in NF1 patients

Read More

Alex’s 12 months of Running

In order to fundraise for NTUK in support of daughter with NF1, Alex is undergoing 12 months of races! Find out more here

Read More

Nerve Tumours UK Dolphins Family and Friends

Our new fundraising hub has it's first fundraiser! Find out more here:

Read More

Ruby Galloway (NF1) is thrown an incredible sleepover!

Ruby Galloway receives her own incredible sleepover after being nominated by nearly half of Plymouth! Find out more here:

Read More