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

24 Hour Marathon – Three Brothers Running for the Fourth
Toby, James & Alex take on an epic 24 hour marathon race to commemorate their brother Tristan
Read More
Centre for Appearance Research NF Survey - Results
Find out how you can take part in CAR's online survey about NF parenting and caring experiences.
Read More
Share your Covid-19 Story - Survey Results
Embracing Complexity share the results of their impact of Covid19 survey, find out more
Read More
Hour of Power – Love Yourself Valentine’s Day workout for NF
Thanks to all those that got their hearts pumping this Valentine's Day for our NF community!
Read More
Rare Disease Day 2021 and Rare Reach Festival
Find out how you can get involved in the first ever Rare Reach Festival and make sure the Rare communities voice is heard!
Read More
NF Said
Daisy takes on a 38-mile running challenge for her sister Millie, 1 mile a day for every person diagnosed with NF2 a year
Read More
Love Yourself - Hour of Power in Support of the NF community
Get your sweat on and spread the love this Valentine's day for our NF community!
Read More