A disabled Flintshire boy’s bid to help other youngsters get specialist treatment is being boosted by a cycling challenge laid down by staff from the UK’s leading producer of breakfast cereals.
Harley Noble who has schizencephaly – a rare and severe form of cerebral palsy that affects his muscles – and his dad Jonny are aiming to raise thousands of pounds to fund treatment at Stick ‘n’ Step centres in Wallasey and Runcorn.
The 12-year-old from Bagillt undergoes conductive therapy twice a week with the charity, which has helped him to learn to move around and talk.
Harley, who attends Flint High School, has set his heart on helping other children receive the same treatment – every place at the centre costs £4,500, with the charity needing more than £500,000 in donations every year to keep open.
His campaign is being supported by a 20-strong team of workers from Deeside Cereals, who will be cycling 75 miles around North Wales on April 1, Easter Sunday.
Their Four Flakes Challenge will see them setting off from the Company’s HQ on Fourth Avenue, Deeside to Buckley, then Wrexham and after that on to the Wirral -taking in the areas of their fellow cereal manufacturers – before returning to the factory.
The company, previously known as Dailycer, is one of the UK’s leading producer of own brand cereal bars and breakfast cereals for major food retailers, and employs more than 160 staff at its production site.
Deeside Cereals Maintenance Engineer Steve Humphreys, who is friends with Harley’s dad Jonny, laid down the cycling change to his colleagues, following two previous successful company bike rides for charity.
Deeside Cereals Managing Director Pete Robertson said: “We have previously raised more than £10,000 for MacMillan Cancer and the Ronald MacDonald Houses with our cycle rides, so when Steve suggested this challenge, we knew that we could help.
“We have been overwhelmed by the support we received in those charity cycle challenges and I am confident that we can help Harley realise his dream of ensuring that other children with cerebral palsy also benefit from this specialist treatment, which has obviously been of great help to him.”
Harley, who was born in St Asaph, was diagnosed when he was a baby after his dad Jonny and mum Christina Lace were concerned that he was not beginning to crawl or walk.
After an MRI scan when Harley was just 11 months old, medics broke the devastating news to them. The scan showed that the right hand side of his brain was affected – meaning that he would not be able to move much of his left side.
“It’s not genetic, it’s something that happened in the first 12 weeks of pregnancy, something went wrong and the brain didn’t form properly,” explained Jonny, 33, a former Flint High School pupil who is now a Team Leader at Toyota’s engine plant on Deeside.
“It was a bombshell at the time – you see your perfect, beautiful baby boy and being hit with news like that was difficult to take. But now he’s such a happy, sociable person, and that makes it a lot easier to get through.”
“He can’t walk and instead he crawls around a lot – he’s very active and he loves to get about, he doesn’t want to miss out on anything. He loves football, he doesn’t like being sat quietly, and he likes to be among everything.”
Harley is doted on by little sister Lilly, who is now aged 10, said Jonny, and stepsisters Aaliyah also 11 and Danika aged 9.
“As soon as Lilly was up and walking, she has been such a star – she’s been so helpful and become such a caring person.
“Harley went to Cornist School in Flint and now he’s in his first year at Flint High School and has an electric powered chair. The school has all the facilities, as everything has been adapted, including a lift. He loves school and he’s always got a big beam on his face when he goes.
“His speech is not the clearest but he also uses Makaton sign language, which is good as it’s single handed and he can’t use his left hand very well – he’s adapted it to suit himself.
“At first he went to NHS physio, where we met parents of children with similar conditions and one parent mentioned Stick ’n’ Step, as it had helped her son to walk. We went to view it and decided it would be good for Harley.
“Conductive education is a Hungarian technique that’s not available on the NHS. It is based on a ‘simple’ concept of human potential – meaning that everyone has the capability to learn and develop irrespective of their starting point. Conductive education combines education, psychology and medical science and considers all aspects of the person simultaneously.
“There are a lot of facilities there, with a sensory room, hydrotherapy room and physio plus speech therapy. They really stretch the children.
“The work they have done with Harley is brilliant and he’s really progressed there. He’s been going for about six years, twice a week, and can leave school for it, as it’s part of his educational therapy. He is shattered when he gets back though he loves going there as well.
“I’ve done some charity events for Stick ’n’ Step and Harley wanted to do something as well. He said he liked to sponsor a child for a year to go through therapy there. It brought a tear to my eye when he said that.
“We don’t pay for Harley’s treatment, it’s all charity funded but the centre doesn’t don’t get any Government help. Harley wants to help others to have the same help that he’s had.
“Together we are doing a triathlon in Cholmondeley Castle in Cheshire in June, with a 400m swim, 22km bike ride and 4K run. I will be pulling Harley along in a boat for the swim section, then he will be using an adapted tricycle for the cycle section, and finally I will be pushing his wheelchair in the run. It’s going to be tough going for both of us.
“Steve suggested that he could also organise a cycle challenge with his colleagues at Deeside Cereals to help raise money for Harley’s appeal. I know Steve through my girlfriend Amanda Jones, who was at Flint High School with his wife Adele.
“I’d like to thank everybody at Deeside Cereals who will taking part in the cycle ride to raise money and make Harley’s dream come true. It’s extremely good to them to give up their time like this, and help children with cerebral palsy benefit from Stick N Step.
“Amanda, who runs Footsteps Dance classes in Flint, Bagillt and Ewloe, is also organising a dance evening next month to raise more money. It will be in Flint High School drama studio.”
Steve, who lives in Northop Hall, helped arrange Deeside Cereal’s previous cycling challenges.
“I wanted to do something to help Harley raise the money – I put the word out at work and people have volunteered to take part, which is very good of them. It’s a long ride but it should be a good day.”
Fellow Deeside Cereals Maintenance Engineer Stuart McHugh from Broughton is a keen cyclist who also took part in the previous challenges.
“It will be good to be raising money for such a great cause at Harley’s appeal, we are all aiming to raise as much as we can so he hits his target to help other children,” said Stuart.
The pair inspired their colleague Elliott Basnett from Parkgate to take up cycling.
“I only bought my first bike a month ago, and Steve and Stuart advised what to get,” said Elliott.
“This will be my first big ride but I am doing training runs and I am quite sporty, so I am looking forward to it. It’s been good to meet Harley as that really helps me understand why we are doing the ride.”
Production Team Leader Jason Byrne cycles from his home in Blacon, Chester, to Deeside Cereals every day.
“It only takes 20 minutes each way, and I clock up 10 miles every day, which keeps me fit, though it’s a bit tough when the weather is bad. It will be good to have a much longer ride and to raise money for Harley’s appeal,” said Jason.
“Steve asked for volunteers to take part in the cycle challenge and I decided to give it a go, as it’s such a good cause.”
Stick ’n’ Step helps 80 children a week, with sessions designed to help each child reach their own potential in terms of confidence, mobility and independence. They work towards personalised goals, such as tying shoelaces or eating by themselves – all designed to translate into movements, techniques and strategies that will help them in real life.
Stick ‘n’ Step corporate and community fundraiser Hettie Miles said: “Harley is a lovely boy who has been coming to the centre for several years, and it has been heart-warming to see how he has developed thanks to the conductive education he has undergone.
“Harley is determined to raise funds so other children with cerebral palsy can also benefit from the programme of activity-based sessions on offer at our centres here in Wallasey and Runcorn.
“We are also very grateful to the team from Deeside Cereals for giving up their Easter break to undertake this cycling challenge. We rely on donations and need to raise over £500,000 every year to stay open and keep helping children and young people overcome the difficult challenges they face.”
For more details on the fund-raising visit justgiving.com/fundraising/harleystriathlon