At any one time, roughly 14 people on the Island are battling Motor Neurone Disease.
The illness will affect every one of these people differently, so it’s hard to predetermine how much care a person may need, what equipment may make their life a little easier — and how long they have until the illness inevitably takes their life.
Joyce Rice, from Freshwater, knows only too well how difficult this time can be. Despite a healthy, active lifestyle, her husband Gordon received the devastating news that he had MND at just 47 years old. At the time, they had a teenage son, Matthew, teenage daughter, Charlotte, and a happy family life here on the Island. News of the diagnosis shook the
Freshwater family, who accepted the support of the Isle of Wight branch of the Motor Neurone Disease Association, in a time of such uncertainty.
“They were so good to us, organising and paying for any equipment we needed throughout Gordon’s illness — which is why today, I am passionate about fundraising for the charity, to help give something back,” said Joyce.
When Gordon first received his diagnosis, at Southampton General Hospital in 2007, he had known for some time that something was causing him to feel unwell. It had started when Gordon began to lose strength in his arms and legs. Work in the garden had become difficult and he’d fallen from his bicycle, finding it incredibly hard to muster the strength to get back up. A hard working member of the team at Wightlink (or Sealink as it was previously known), a skilled cricket player, cyclist and self-taught wood turner, Gordon had been fit and well.
“MND is a rare condition,” said Joyce. “Many doctors may never come across it in their whole career, so getting a diagnosis can be difficult for some people. For us, the news came quite soon — but it didn’t sink in for some time.”
A well loved member of the West Wight community, Gordon was born and raised on the Island. Following in the footsteps
of his father, he’d spent more than thirty years working at Sealink/Wightlink. Gordon and Joyce had met on a night out at the Royal Standard pub, in Freshwater one New Year’s Eve. Gordon had been dressed as a St Trinian, alongside his
brothers, Perry, David and Duncan. Joyce instantly fell in love with this man who was bursting with life — a family man and practical joker, who loved to draw, supported Liverpool FC and would tinker in the shed at weekends. The couple went on to marry and built a wonderful family together.
Gordon struggled tremendously with the shock of his diagnosis at the very beginning. In the months that followed, he tried his very best to go on as normal — convincing Wightlink to allow him to stay at work.
“The team at Wightlink were marvellous,” said Joyce. “When Gordon could no longer walk very well, they created a job in the back for him, doing the tickets.”
Friends, family and members of the local community came to offer help and support and the Island branch of the MNDA provided wheelchairs, a chairlift, various equipment and emotional support to both Gordon and Joyce. During his illness, Gordon fulfilled a lifelong dream to tour his beloved football team’s home ground and went on holiday abroad with Joyce.
up for him downstairs and his mother moved in to help Joyce with Gordon’s daily care, as did an overnight carer. The Hospice at Home team would visit the house, along with Marie Curie nurses and plenty of colleagues from Wightlink — even the local vicars stopped by to help wash and care for Gordon. The family had an abundance of support.
Gordon would go in and out of Earl Mountbatten Hospice, Newport, for respite care, however 18 months into the illness, a chest infection caught hold, which left Gordon with little strength to fight from home any longer.
Even once his stay at the hospice had become more permanent, Gordon’s charming character continued to shine through. He would regularly speed along the corridors in his electric wheelchair, or command his Megabee machine to read out mischievous comments. The Megabee became Gordon’s voice when he could no longer speak for himself.
Gordon and Joyce’s son Matthew celebrated his 18th birthday with a meal at Medina Quay in 2008. Gordon managed to leave the hospice long enough to make sure he was present. However, just five weeks later, the devastating effects of Motor Neurone Disease took over, and Gordon died peacefully at the hospice, surrounded by his loved ones.
So touched by the endless support offered to her and her family in their time of need, Joyce decided to give something back and became a fundraiser for the Island branch of MNDA. To date, Joyce and her team of hardworking regular volunteers have raised in excess of £60,000, all of which stays here on the Island, to support other people like the Rice family.
Fundraising efforts include regular table top sales, a monthly quiz, Brighstone Tree Festival, various events and visits to parliament to challenge funding reassessments. The MNDA Isle of Wight also provides a monthly support group for sufferers and their families and allocates some of its funding to research. “As Motor Neurone Disease is rare, there isn’t always funding available for researchers to work on finding a prevention and new treatments,” said Joyce. “The Ice Bucket Challenge, which went viral in 2014, created a great deal of awareness and raised a lot of funds, but nothing has quite captured the nation’s interest in the charity in the same way since.”
Joyce’s team of 14 excellent helpers have worked tirelessly alongside Joyce to continue raising awareness and funds — while villagers have come in their hundreds to drop off quality items for table top sales, bake cakes, knit baby clothes or simply lend a hand.
“I could not have done any of this without the support of so many people. We’ve all become so close along the way,” said Joyce.
The IW branch of the MNDA strives to reach out to anyone who receives the same devastating diagnoses on the Island.
“The charity recognises the urgency for equipment, and uses the funds we raise to make this terrible time a little morebearable,” said Joyce.
To raise further funds for the charity andmark the 10th anniversary of Gordon’s death, Joyce has organised a special concert at Freshwater Memorial Hall, on Saturday, October 6th.
Gordon’s children, Matthew and Charlotte have gone on to lead successful lives in the wake of such difficult times. “I’m incredibly proud of our children,” said Joyce. “They’ve both gotten themselves through university and are now living happy lives, in fantastic careers.”
Gordon’s memory lives on at Wightlink, with a bench dedicated to him. The West Island Cricket team, where Gordon played passionately with an unsurpassed number of runs, now organise a memorial cup in his honour. Even Gordon’s incredible Dickensian drawings still live on on headed paper at the hospice.
Gordon left a great legacy in the wake of his battle with Motor Neurone Disease — the awareness and funds that his loved ones have worked so hard to achieve will continue to help many Island families for years to come. For more information about the Island branch of MNDA, or to find out how you can lend a hand too, visit www.mndiw.org.uk.
The first time I met David Icke was in 1985. At that time, he was one of the most famous faces on television, via Grandstand, Newsnight, Saturday Superstore, The Nine O’Clock News and the sudden birth of live TV snooker.
It’s been nine years in the making but now an Island writer has been given the chance to tell his story about life with cerebral palsy.Josh Barry, 31, of East Cowes, is this month launching his autobiography, ‘Adapted’, the story of his life and his determination not to be defined by his disability.
Only a few friends knew I was going to London to interview Joan Armatrading and they were all envious I was meeting up with such a talented singer songwriter.
At the ages of just 19 and 21, brothers Martin and Rob Drake-Knight embarked on a mission to redesign the clothing industry, while taking steps to solve the Island’s youth unemployment problem.
It was 2009 — there was limited awareness of the sustainability of the clothing industry. Plastics and synthetic use was at an all-time high and young people on the Island were struggling to find rewarding employment.
The brothers were passionate about creating a circular economy which changed all this. They had learned a lot about business while working on Sandown Beach deck chairs for ten years with the infamous Kenny Kemp. He’d taught them to be up and out early each morning and had given them both responsibilities which encouraged them to want to succeed.
Rob had studied business and Mart had experience as a wind turbine designer, so they had the skill set which pushed their business idea forward.
With just £200 in their pockets and a garden shed to call their office, Rob and Mart pooled their money into getting their business under way — a brave move, but one that would ultimately pay off.Their first goal was to make a range of clothing from organic cotton in a renewable-energy-powered factory — with little scope for failure, the brothers designed and created their first T-shirt, and Rapanui was born.
Like any small business start up, mistakes were made along the way.
The first design was embroidered the wrong way up, nearly half the funds were blown on letter headed paper and there was a slight mishap which involved accidentally wiring the office into the neighbours’ board and blowing up their fridges — which became slightly more serious, when they remembered the neighbouring building was a morgue. Learning as they went, Rob and Mart had soon expanded
their premises to Weaver’s Yard, Bembridge — which was only possible thanks to the help of Terry Weaver who negotiated a discount. Rapanui had grown from a team of two to five or six — and the plan to provide attainable employment to young undergraduates had started to come together.
“We find it especially rewarding to watch young people doing well,” said Mart. “We’ve seen some exciting talent in so many of our apprentices. Rapanui has been a team effort right from the start. The growth of the business has only been possible because of the people who work here.”
Word about Rapanui started to spread, and in 2010, the way in which Rob and Mart did business was described by the press as “game changing”. A number of momentous orders arrived from the likes of Sky Sports, Red Bull and Lush and enough money was made to give the business a good footing. The dream was starting to become a reality.
The production method was by now well researched and practised and fit well with the ethics of the business. Responsibly sourced and traceable organic cotton clothing was made in wind-powered factories, which were subsequently screen printed, to order, in house. Printing to order hugely reduced wastage. Even the ink used in the printing methods is completely plastic free — and, incredibly, some of the wind turbines used in the factories in India were made right here on the Island, by Vestas.
Over time, the Rapanui team developed a number of efficient systems, which assisted the smooth running of the warehouse, such as user-friendly packing programmes, robotic machinery and real-time, intelligent order printing.
“What we are trying to do with technology and sustainability requires new ideas all the time and a lot of energy. We find young people are great for this sort of thing. They don’t need to be qualified or experienced, they just need to show passion and capability — we train them to do the rest,” said Mart.
From Bembridge to Cowes, the business continued to grow, before a devastating fire took hold of Medina Village, where Rapanui was based. Unlike other businesses, who lost everything, Rapanui escaped with most of its equipment but the building was destroyed and the business needed a new home.
In 2016, the business took over the old Co-op store, in Freshwater, where it now employs 45 full-time members of staff and 25 part time — all of whom are from the Island. Over the past four years, Rapanui has trained up 12 apprentices, who have all gone straight into a permanent role. The average age of employees is 24 — although the actual age range is from 17 to 65. Approximately 75 per cent of the management team were originally trained in house — and, impressively, one of the current directors and shareholders was an apprentice just five years ago.
As the increasing success of Rapanui would not have been so easily achievable without the help of various businesses along the way, Rob and Mart wanted to pay it forward — and now offer an additional string to their bow for start-up businesses. Teemill works by providing all the manufacturing, software, professional imagery and warehouse services of an established business, to start ups with their own t-shirt design. 15,000 small businesses around the world already use the programme, which cuts out the many hurdles that small businesses and start ups have to overcome.
Rapanui also offers £5 for every used T-shirt that is returned when no longer in use. This material then goes back into the production process and is resold soon after as a recycled T-shirt — the epitome of a circular economy. Solar panels on the roof also power the Freshwater factory. Plans for the future include building a larger warehouse, ideally nearby in Freshwater. Rob and Mart have come to love their newest office location, describing it as a: “Silicone Valley job in a nature reserve.” They are very happy living the Island lifestyle, surfing down at Compton during their lunch breaks and have no intentions to move the business away from the Island.
“We’re so excited about the future of business on the Island,” said Mart. “There seems to be a great momentum of small businesses doing cool things at the moment. We love seeing them do well. Together, with the rest of the Rapanui team, we’ve managed to create one of the most advanced clothing factories right here on the Island. It proves living on the Isle of Wight is no barrier to success.”
You can read the online Beacons for each area of the Isle of Wight by visiting the links below: