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
Nerve Tumours UK joins the “Embracing Complexity” Coalition
Find out more about the coalition we have decided to join
Read More
Researching NF1
Rory Deasy has conducted research into the treatment of children with NF1. Here he talks about his research journey.
Read More
Megan’s Journey
Megan talks about her experiences of being a student with NF and what she took away from the NF conference in San Fransico
Read More
Aldo goes to Primary School
Find out more about the book aimed at helping people understand the life of an autistic boy going through primary school here
Read More
Eva’s Races
Eva has run 3 races over the past year for NTUK, find out what has been motivating her here:
Read More
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:
Read More
NTUK Dolphins at the Swim Serpentine 2019
Find out more about the incredible day for all involved at Hyde Park here:
Read More
Rotary’s Summer Evening Jazz Concert in aid of NTUK
Find out more about the amazing Jazz Concert that was hosted in aid of NTUK here:
Read More