Brave Anne Leece’s family fighting for a cure for motor neurone disease
MOTOR neurone disease is a rare condition which damages the entire nervous system, leading to weakness and muscle wasting.
Thanks to scientist Stephen Hawking, who has suffered with the disease since he was aged just 21, it has been in the public consciousness for nearly 30 years.
But depending on the type of the disease a sufferer has, most people only have a two to five year life expectancy.
Anne Leece, from Harwood, lost her battle with motor neurone disease in 2010 — six years after being diagnosed.
Initially, the mother of three and grandmother of four was given just 18 months to live, but she refused to give up — still working as a legal assistant at Bolton law firm Fielding Porter even after she became confined to a wheelchair.
Mrs Leece, a keen golfer, was Lady Captain at Harwood Gold Club and played with husband Bill, aged 69, until she sadly had to give up soon after she was diagnosed.
Her family, including daughters Debbie Brookes and Bev Kelly, supported and helped care for her until she passed away peacefully in Bolton Hospice with her family around her in March, 2010.
The sisters, along with brother David, want to share their story to raise awareness about the condition, which affects about 5,000 people in the UK.
Mrs Brookes, aged 40, said: “It started in 2002, but it was 18 months after then when she was actually diagnosed. She was always fit and active, playing golf and badminton regularly.
“It was when she was playing golf that she realised something wasn’t right — she noticed that her grip was becoming loose and she wasn’t as strong on her legs.
“Soon after we were in Majorca on a family holiday in July, 2003, when we all noticed something was up. Just a five-minute walk took her much longer.
“Little did we know she’d already been to the doctor by then but she’d kept it to herself because she was a proud woman and didn’t like to worry the family.”
Mrs Leece finally sat her family down and told them she was having tests at Salford Royal Infirmary before her diagnosis in October, 2003.
Mrs Kelly, aged 39, said: “We’d never heard of motor neurone disease before. Because she had a lot of twitching, the doctor first thought it was Parkinson’s disease. But when she was diagnosed in the October, we were told that she had 18 months to live and that it was terminal. That was a big shock.
“The usual life expectancy is three years, but she’d already had it 18 months. You can get it in your upper body and lower body or full body — she had full body. We were devastated.
“They gave her Ritalin, which is supposed to slow down the process, but there’s no real way of knowing whether it does or not, as everyone responds differently.”
Over time Mrs Leece’s mobility became more and more compromised, leading to her using a walking stick and then a wheelchair — but the determined lady continued to keep as busy as she could.
Mrs Brookes said: “It affected her legs first and had to use a walking stick.
“She also found it difficult to pick things up and she had to give up golf, which was really hard for her because the disease was taking away the main thing in her life which she loved.
“But she’d still do the housework with her walking stick and worked full-time.
“When she became wheelchair bound she still worked — they just gave her a ground floor office — but in 2006 she had to leave.
“The wheelchair was the biggest hurdle because mum and dad had to move from the family home into a bungalow.”
Mrs Leece was given help by Bolton Hospice, Marie Curie and Meadow Bank care home in Green Lane, but her family was always on hand to help.
Mrs Brookes said: “We were all helping with care by then — showering, washing, putting on her make-up and her jewellery — which she would never go without. She was always well dressed and looked after her appearance.
“Her upper body was the last thing to go. She had to wear a neck brace to stop her head from flopping forward. Despite this we made sure her 60th birthday and Christmas in 2009 were a celebration. She was determined to be well enough — and she was.”
The sisters have recently raised more than £4,000 for the Motor Neurone Disease Association after a weekend of fundraising, including a sponsored walk and fun day at the White Horse pub in Harwood, and are keen to continue to raise more money in the future.
l For more information about Motor Neurone Disease or to donate, visit mndassociation.org
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