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A brother and sister have opened up about the cruel twist of fate that saw them both lose their partners to the same rare and debilitating disease.
Brian Sackett, from Sturry, lost his wife Diane to motor neurone disease (MND), three years after she was diagnosed with the terminal condition.
The grieving great-grandfather, left devastated by her death in 2009, was supported by his sister Hilary Smith, also from Canterbury.
Brian and Diana joined Keilan Webster in the studio
But in what was a bitter and unexpected blow to the family, Mrs Smith lost her husband Colin last year to the same terrible disease, which develops in just two people in every 100,000 each year in the UK.
The siblings are sharing their heartbreaking accounts ahead of a walk in October, which they are holding to raise money for the East Kent group of the Motor Neurone Disease Association (MNDA) for it’s 40th anniversary.
They admit for a family to lose two people to the same horrific condition is particularly hard to bear.
Mrs Smith said: “Being told in June 2017, after many months of struggling with Colin’s health, that the diagnosis was motor neurone disease was unbelievable.
“Having watched Diane endure the same horrid disease and eventually pass away 10 years ago, I just thought it couldn’t strike our family again. How wrong was I?”
MND is a rare, terminal condition affecting nerve cells called motor neurons in the brain and spinal cord, causing weakness that gets worse over time.
It affects the ability to walk, talk, eat, drink and breathe when muscles weaken, stiffen and waste. There is no cure.
Mr Sackett says his wife Diane initially thought she had repetitive strain injury in her fingers from her work as a secretary but, after two years of symptoms and tests, they were told the devastating news.
“We both cried our eyes out,” he said. “The first question she had was, ‘Brian, will you stay with me?’. That’s just awful.
“We’d been together 30-odd years and I became her carer. You love them, you want to take care of them.
“At first she couldn’t do her hair so I had to learn to do that. She couldn’t put her make-up on so I got a hairdresser and beautician to come and show me how to do it.
“I fed her, I showered her - we used to joke that I would hose her down.
“It was just a daily experience. The mantra was ‘if this is the best I’m going to feel, I’m going to make the best of it’.”
At the point of her diagnosis in 2006, the couple were told Diane could have as little as three months left, but she went on to live for a further three years.
“Before she died, she blamed me,” Mr Sackett said. “She said ‘it’s your fault, you looked after me too well’.
“She never lost her brightness or sense of humour and that’s what carried the both of us through.”
The 79-year-old, of Ashendene Grove, admits his wife’s last six months were the hardest as he watched her deteriorate. She died aged 64.
When Mr Sackett found out about his brother-in-law’s diagnosis two years ago, his first thought was he needed to look after his sister.
Mrs Smith, who has five grandchildren, admits the family tried to get on with normal life but there was an underlying sadness.
Unlike Diane, Colin’s symptoms started in his throat and he had problems swallowing.
“He had numerous tests,” she said.“We were pleased when everything came back fine, he didn’t have cancer, he was healthy as can be. But then MND was diagnosed.
“We had followed Brian and Diane’s journey so I knew where it was going. I never thought it could strike a family twice.”
Colin, previously a company buyer, died last September aged 75, 15 months after being diagnosed.
“The day he passed away he managed to walk from one room to the other, even though he was very weak,” said Mrs Smith.
“He was strong. He hated the word but he was stoic.”
Mrs Smith, 66, who had been married to Colin for 47 years, says nothing else mattered except looking after him.
“As he slowly grew weaker I had mixed emotions. On the one hand I didn’t want to lose him, but on the other I didn’t want him to suffer any more.
“So on that day in September 2018 when he finally passed away, there they were again, the mixed emotions.”
On Sunday, October 6, at 2pm the siblings are asking people to walk 40 minutes for £40 sponsorship at Lifestyle Fitness at the Canterbury Campus in Knight Avenue, to raise funds for MNDA.
To get involved contact Mr Sackett on 01227 710769 or email rubywalk@mnda-eastkent.org.uk.
