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.
As Gordon’s illness developed, he began to lose his voice. A bedroom was made
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.