When CJD brings death to a mother at prime of a happy life

Searching through his wife's things the day after her funeral, Michael Turner finds an old newspaper cutting about Kay's debs…

Searching through his wife's things the day after her funeral, Michael Turner finds an old newspaper cutting about Kay's debs' ball 14 years ago; a ring cushion from their wedding seven years ago; their four-year-old son James's first nail clippings; little bank-books for James and his two-year-old sister, Enya.

"I never even knew she had these for the kids," he almost whispers. From where he is kneeling on the living-room floor he looks at his mother.

"Kay looked after everything," nods Ursula Turner. She is sitting in the living-room of her son's modest family home just outside Portarlington, Co Laois. "She kept everything to do with her family. That was her life - her kids, her family and her little house."

Kay Turner died on Tuesday evening. At 31, she was the first person in the State to be diagnosed with nvCJD - New Variant Creutzfeldt-Jakob Disease, the human form of the BSE. It is thought she contracted the disease when she and Michael were working as chefs in London between 1989 and 1995. The two had been together since 1986, when they met while working as chefs in south Dublin.

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They moved back to Ireland after James's birth and bought a house in the Cloney Hurke area of Portarlington. "Kay wanted to live near her parents," remembers Michael, "and there's no arguing with a woman when you love her."

The fact that something was wrong first became apparent to Kay last November. By the time the illness was diagnosed six months later, she was unable to stand unaided, to write properly or to hold a coherent conversation.

"At the start she had pains in her right leg," explains Michael, in his quiet Dublin accent. "If you touched it or put water on it, it would sting. Then it moved up her chest and across her body."

Their local GP, Dr White, "couldn't understand it", he says. "He's a great man, tried to do as much as he could, but I came home one evening, and Kay was nearly suicidal. The doctors began to put the whole thing down to depression."

By this stage - the end of April - she could not walk unless leaning against Enya's buggy.

"She said it felt like being drunk all the time, and she was getting agitated by the kids, which is something that never happened."

Kay was admitted to Tullamore hospital for a series of tests. She was discharged, however, apparently on the assumption that she was indeed suffering from severe depression coupled with back trouble. Physiotherapy was recommended.

Michael, who lost his job as a chef a few months ago because of the amount of time he spent caring for Kay, was unhappy with the diagnosis and rang his mother in Dublin, who organised an appointment with a young doctor in Glasthule, Co Dublin.

Two days later Kay was admitted to St Vincent's Hospital, Dublin, where she was under the care of the senior neurologist, Dr William Hutchinson.

"Dr Hutchinson was brilliant, but Kay was really beginning to drift off. She was almost hallucinating, imagining her legs were being operated on."

Asked what he understood about what was happening to his wife, Michael stares almost vacantly. "I didn't know what to think." Running his fingers slowly around the rim of his mug of coffee, he shakes his head. "Every day, she lost something else."

ON May 21st, a Friday morning, Kay was brought in a wheelchair from St Vincent's to Beaumont Hospital, where the final diagnosis was made. "I had heard of it of course," says Michael, "but I didn't know where to turn, or who to talk to. I told my mother that evening, and Kay's parents. Paddy and Patsey [McGuinness] were devastated. And then I brought Kay home."

The family decided not to tell Kay what she was suffering from, though Michael thinks she knew her illness was terminal. "She'd sleep on the sofa during the day, and at night I had a baby monitor to hear if she wanted anything. She was going down. Her personality was almost gone," says Michael.

"Every now and then she might indicate a joke," adds Ursula. "She couldn't speak really, but she could squeeze your hand to let you know she knew you were there. To the end she responded to Michael and her daddy. She'd reach out when they'd come in. And she'd light up when James and Enya were there."

By the middle of July, she was hardly eating. By mid-August "if she drank a spoon of water that would be good".

At the beginning of August Kay was admitted to a hospice in Mountmellick to give Michael a break, though he spent every day there, as did her parents.

Michael thought Kay was about to die last Sunday. Though she was anointed then, he was able on Monday evening to bring his young wife to die at home.

He had built a special bedroom for her, organised a special hospital bed and a slinglift to help her move from the wheelchair to the toilet and her bed.

"I had to tell James a few days before that the angels were taking his mammy. The poor fella. The little legs went from underneath him. He said he didn't want the angels to take his mammy away. I told him he couldn't be crying in front of his mammy, and he wiped his eyes and went in and hugged her and told her that he loved her.

"And then he came out of her room and started crying again. He said, `Don't worry daddy, we'll be alright'."

Michael is bitter that he was not told earlier that his wife would die. He is bitter they could not spend their final months together "doing something special".

They went to Lourdes in June but, in Ursula's words, "she was not able for it".

Michael says he could "not believe it when she took her last breath, at a quarter to six on Tuesday evening. I thought I'd cope OK with all this stuff," he says, patting a five-inch thick folder of information from the CJD Support Group in Britain.

"And now I have to worry about myself and the kids. It's a 10-year incubation period and there are no tests. Who knows if we have it? The whole thing, it's sickening."