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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:

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Eva’s Races

Eva has run 3 races over the past year for NTUK, find out what has been motivating her here:

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Carl’s Story in memory of his sister who had NF2

Carl recently hosted his own wrestling event in memory of his late sister, find out more on his story here:

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NTUK Dolphins at the Swim Serpentine 2019

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Rotary’s Summer Evening Jazz Concert in aid of NTUK

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K-Star Wrestling in aid of NTUK

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2019 NF Conference

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Kate Swallow’s Fantastic Fundraiser at the Tipsy Pig

Find out more about the succesful and throughly enjoyed charity music event hosted by Kate Swallow at the Tipsy Pig

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Support Specialist: One of Many Cases

Have a read about a specific case study detailing the kind of work our support specialists offer to those with NF

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Thank You James Gamble!

James Gamble just completed an incredible fundraiser in which he has cycled a total of 980 miles for NTUK! Find out more here

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Registered Charity Number: 1078790 and SC045051

Nerve Tumours UK has taken reasonable care to ensure that the information contained on this website and in its newsletters, literature is accurate. Nerve Tumours UK cannot accept liability for any errors or omissions, or for information becoming out-of-date. Any information given is not a substitute for getting appropriate medical advice from your own GP or other healthcare professional.

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INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

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