Robin Raines, who has experienced Huntington's Disease in his family

Robin Raines has endured the effects of a cruel disease which first claimed his mother-in-law and then his beloved wife.

Now two of his children have the same devastating hereditary condition.

Reporter Stephen Waite spoke to him about his extraordinary experience of living with Huntington’s.

When Robin was encouraged to partner a girl on the dance floor at the Coniston Hotel, he could not have imagined the outcome.

He was at the Kent Farm Institute, where Sittingbourne Community College is now, when he met Andrea Deverson.

He proposed on the same dance floor, but was initially rejected with a slap in the face.

Despite the false start, they married at Detling on December 1 1962.

At that stage, Robin, who might not have tied the knot had he taken up an offer to work in Canada, was unaware there was Huntington’s in his wife’s family.

But there was something odd about his mother-in-law, Mary: involuntary movements, a hypersensitive temperament and a tendency to scream.

“Every time I asked about Mary, everyone clammed up. The answer was always the same, ‘Mary had a condition but we don’t talk about it’.”

Being curious, Robin found a book in Sittingbourne Library which mentioned Huntington’s Disease (HD) and the symptoms fitted.

“I asked Andrea if anyone else in the family had this problem and she said gran had been a bit strange and would scream and shout at the most peculiar things.

Happier times: Robin Raines's son Justin and daughter Sarah. Picture: Robin Raines

“Going back then, I suppose people tended to shut it away. They certainly did not talk about it.”

But not talking about it was far from healthy, as a startling deathbed confession proved.

Many years after Andrea’s gran’s death, Robin and his wife went to Medway hospital where Andrea’s grandfather, a Mr Pepper, was critically ill.

“He said ‘I have a confession for you. My wife, I murdered her’. He said he smothered her and left her for three days before he called a doctor.”

Andrea’s gran, Robin presumed, had also had HD.

When Mary’s health deteriorated and her husband Albert died, she moved in with Andrea and Robin at Kent Avenue, Sittingbourne.

But Mary made Andrea’s life hell, said Robin, who approached a doctor to ask if she could go into care but was told “no”.

In desperation, he returned. “I went back and said ‘Either Mary goes into somewhere or I will kill her’.
“The doctor said ‘Mr Raines, do you realise what you just said? I could phone the police and say you are threatening to kill your mother in law’. I was so desperate.”

Within a few weeks, Mary went into the old Milton hospital and died two years later.

Until then, Andrea had not shown any of the symptoms. But aged 35, she had an odd feeling in her fingers.

Robin Raines, wife Andrea and then Mayor of Swale Cllr Peter Morgan

A doctor said he could not find anything wrong, apart from she could not walk in a straight line.

Another doctor, with experience of dealing with HD, verified the couple’s worst fears, confirming she had the hereditary neurological condition that eventually destroyed the brain.

“Andrea took it badly, not for her but because we already had three children,” said Robin.

“Her words were, that we, between us, were going to commit murder on three children.”

Nicholas was their eldest, followed by Justin and finally Sarah.

Knowing the cruel inevitability of the situation, the Raines threw themselves into a public awareness campaign, in the hope that care could be improved in time for when Andrea and their children needed it.

It started with Larkfield Leisure Centre, which opened a remedial centre and Andrea was the first person inside.

The campaign raised awareness of Huntington’s: what disabled people could achieve and what companies could do for disabled people.

They set up a charity and called it Whisper.

“That’s what everyone was doing about Huntington’s, they never talked about it, always whispered about it,” explained Robin.

huntington's disease facts

huntington’s disease is caused by a faulty protein-producing gene, discovered only in 1993.

it damages nerve cells in the brain which affect movement, speech, memory, emotions and can lead to severe psychological problems and physical deterioration.

anyone whose parent has the condition has a 50-50 chance of inheriting hd.

the disease, if inherited from a male relative, tends to develop earlier in life.

a genetic test can confirm whether a patient has hd, but cannot predict when they will develop the disease.

about 1 in 10,000 people in britain has hd.

“I felt I wanted to have a specialist centre for Huntington’s. That was my main aim.”

The campaign took them all over Kent, which now has three homes specialising in caring for HD sufferers.

Meanwhile, HD had started to take hold of Andrea. “The first thing to go was her mobility,” said Robin.

But as it worsened, the screaming became the biggest problem. “She could scream non-stop for four hours. It was ear-piercing. I had complaints from neighbours. It made me feel sick.

“That’s where the drugs came in, to pacify her. They were necessary to keep the peace between Joe public and my household.”

Eventually, the constant demand on Robin as a carer took its toll and he collapsed, mentally and physically exhausted.

“When I was diagnosed with manic depression, it was the end of the road for my caring.”

Andrea went into the Frank Lloyd nursing home near the Memorial Hospital.

While there, her condition became so bad that Robin considered he had lost his wife.

“I was sitting on my own and I thought 'I have lost her'. From that moment on I was dealing with a disabled person.”

Andrea died on September 23, 2004, aged 60, the day before Nicholas’s birthday.

While Andrea’s suffering was over, Robin was grateful she’d avoided seeing her children suffer.

Nicholas was the first to show symptoms, despite never accepting HD.

His dad said his son had been in total and utter denial.

He had joined the Army after leaving school and, unbeknown to Robin, had fathered a child.

Tragically, the boy, Ben, died in a care home and Robin never met him – another victim of HD.

Justin was different. He joined his father on the campaign, publicising the condition he was going to end up with.

Described by his dad as a happy-go-lucky character, he was a regular at the Gore Court Arms.

"every time i see (my family), it’s like having a knife thrust in - you are never free of it.
it’s a very difficult, heart-breaking condition to deal with" – robin raines

He married Claire in 1995 and they later moved to Kent Avenue, opposite Robin.

“I feel so grateful to my daughter-in-law. I cannot pay her more than the highest compliment because she did a fantastic job looking after Justin.”

Seven years ago, Nicholas, requiring specialist care, went to live at Millstream House in Strood.

Last year, he was joined by his brother. Their sister, Sarah, who lives in Ashford, has so far shown no symptoms.

Robin and Claire make weekly visits to Millstream, which he said was all he had ever hoped for.

“No two Huntington’s sufferers are the same,” said Robin.

“Justin has a bizarre obsession about having his teeth cleaned. When they take him out, wherever he goes they take his toothbrush and toothpaste.

"He throws off into a paddy unless his teeth are cleaned. That’s the beauty of Millstream, they go along with their behaviour.”

Robin will be eternally grateful Millstream exists, but he said visiting is hard.

“Every time I see them, it’s like having a knife thrust in - you are never free of it. It’s a very difficult, heart-breaking condition to deal with.

“By electing to look after someone with Huntington’s you surrender your life. You purely do it for love.”

On reflection, Robin readily admits he is a sadder person for having lived with Huntington’s but also glad he experienced it.

“Had I not married into Huntington’s, I would not have known about it. If you read about it in a book you would say ‘That person has a vivid imagination’.

“But I have witnessed it for real.”