A 13-year-old boy who raised more than £7,000 for a charity researching a cure for a debilitating condition that affects his mum and brother has been given an award by Nottinghamshire Police.
Dylan Ward completed a 50-mile walk across two days to raise money for NF2 BioSolutions UK, who are currently working to find a cure for Neurofibromatosis type 2 (NF2).
NF2 is a genetic condition that causes tumours to grow along nerves and while they are usually non-cancerous, they can cause a range of symptoms.
Dylan’s mum Joanne and his brother Oscar both have the condition.
Joanne explained: “NF2 is a rare genetic disorder that affects about 1 in 35,000 people and is characterised by tumours in the central and peripheral nervous system.
“Basically that means tumours can pop up anywhere on any nerve.
“Often if intervention is required (surgery or radiotherapy), the damage to the nerve has already been done and causes a loss of function of that particular nerve.
“When these nerves control legs, arms, sight, sound etc then losing the nerve function will have a severe effect such as deafness, blindness or paralysis.
“I was diagnosed in 1999 and I had a golf ball size tumour on my hearing and balance nerve, so removing the tumour left me deaf with balance dysfunction – those high heels are long gone!
“I have severe dry eyes because my facial nerve was also affected, cataracts in both eyes. I currently have three other cranial tumours and 10 spinal tumours.”
Dylan, who is completing his Bronze Duke of Edinburgh award with his school, Bramcote College, looked at the volunteering option and saw the lack of opportunities due to the pandemic.
When he saw that there was a fundraising option, he decided to raise money for charity and that is what sparked his 50-mile walk.
Dylan set up social media pages to help raise money for the cause and garner support for people to join him on his walk.
Joanne explained: “During lockdown he (Dylan) spent so much time with Oscar and he was able to see how it affected him more.
“When we talked about Oscar’s NF2 he said he wanted to help all the children affected by NF2.
“He set about creating social media pages and decided to do a Captain Tom-style event, so he walked around the block where we live 100 times, which when measured ended up being nearly 50 miles.
“The event was organised for January initially but after Christmas Nottingham went into Tier 4, which meant anyone who wanted to support the walk wouldn’t be allowed to come.
“Walking 50 miles on your own is obviously quite a task, so he decided to postpone to get the moral support.
“England then went into full lockdown which meant another postponement and it was finally scheduled for 17 and 18 April which is when he did the walk and he did 95 laps that weekend.”
Dylan raised more than £7,000 for NF2 BioSolutions and was joined by his football team, Beeston FC for the final five laps.
Inspired by what he had done, Joanne and her sister nominated Dylan for the Young Inspiration Award as part of Nottinghamshire Police’s Live Our Best Life Awards.
The awards, endorsed by the Stephen Lawrence Day Foundation, are designed to celebrate the successes of young people through adversity.
Dylan was chosen as winner by Nottingham Forest Community Trust and as a special surprise, was given the award at his school on Tuesday 25 May 2021.
Nottingham Forest kindly donated a ball signed by the first team and a £100 gift card.
Joanne is pleased that her ‘hero’ has been recognised in this way.
She said: “I am really very pleased that there was someone willing to help make a difference and him thinking about others, he’s put in so much effort to help raise awareness of NF2.
“He obviously wants the best future for his brother in particular (and me). There are medical advances all the time, so who knows what can happen in the future and I think gene therapy has enormous potential to change the world for a lot affected by rare disorders.
“He’s a hero to us raising so much money and awareness for NF2, and I hope it inspires others. I am over the moon he has been recognised for all the effort, hard work and determination he has put in.”
Youth outreach worker Romel Davis masterminded the Live Our Best Life Awards and has praised Dylan for the work he did.
He said: “What Dylan did is truly remarkable.
“At just 13 years old he is already an inspiration. During lockdown he decided to use his time for something incredibly positive and he should feel very proud of himself.
“I’d like to thank Nottingham Forest for supplying Dylan with the ball and gift voucher and I hope he can use it to raise some more money for NF2 BioSolutions.”
