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
Category
Reset

Nerve Tumours UK Lottery

Read how the NTUK Lottery helps make a difference to the NF Community

Read More

Manchester Comedy Night

Manchester's Frog & Bucket Comedy Club hosted the 2nd date on the NTUK 2022 comedy circuit

Read More

Medical Photography of dermatological conditions - research

Research study: Patient perceptions of medical photography of dermatological conditions

Read More

#BackThe1in6

Read the My Neuro Survey findings from the Neurological Alliance & sign the petition for a Neuro Taskforce to deliver change

Read More

Austin’s NF1 story

Austin's mother, Katie, describes how local biker clubs have helped to support Austin since his NF1 diagnosis

Read More

NTUK Comedy Circuit 2022

Three more dates for your diary: Manchester 14/6, Newcastle 12/7, Glasgow 14/7. Altogether now: "Happy birthday NTUK!"

Read More

RideLondon-Essex 2022

Thank you to our RideLondon-Essex 2022 cyclists! Click here for some great photos from the day

Read More

Pat’s Triathlon Challenge

Pat is taking on a 3 day triathlon style challenge to raise awareness & funds for Neurofibromatosis research & support

Read More

World Neurofibromatosis Type 2 Day and 40 Years of NTUK

A celebration and call out to get involved, ask questions and join the community with Emily Owen

Read More