'They've helped us have a life'

In the first of a series of articles on the work of the hospice, Chris Webber meets a family whose lives have been transformed by its work.

THE doctor held their newborn child as he paced the hospital room. Gentle and quietly authoritative, he had diagnosed their baby's condition as muscular dystrophy and the Phillipson family looked to him for assurance, to be told everything was going to be all right.

But Dr David Gardner-Medwin, a world authority on the muscle wasting condition, didn't do that. Turning on this family, a family still in shock, he began to rant at them, calling them blithering idiots.

"This man was God to us and we didn't know what the hell was going on," says Keith, 42. "But then, in a single moment, he turned and said 'that was a little lesson for you.'

"He was teaching us to be strong, to research the condition, to prepare for the future. He was letting us know that a teenager with a condition like this can get horribly frustrated and can shout at you too, especially if he's been spoiled.

"He was being hard to prepare us for our life ahead with Lewis. Our doctor was treating our heads in the cause of helping Lewis. It worked and he is still a hero to this family."

That wasn't the only tough-love lesson from the doctor. He made sure Keith and mum Judith, 40, themselves became authorities on the condition. Says Keith: "We wrote off around the world. I remember I read about how muscles can be transplanted in mice and rats with muscle wasting conditions and it worked. I thought, 'Great, sussed it, if I give my arm they can use the muscle to save my son.' I was soon disabused of that and any thought of a cure in Lewis's lifetime."

Those early, harsh lessons about the hard life that lay ahead for the Phillipsons, of Newcastle, were nothing but the simple truth. In the eight years since then, the couple have had to cope with seeing their son nearly die, worrying that they were neglecting their daughter Marie, the seemingly intolerable strains on their relationship, years without a single good night's sleep, constant nursing and, worst of all, the knowledge that whatever they do their son's life will be cut short.

That's why the Butterwick Children's Hospice, 50 minutes drive away in Stockton, has a value beyond words to the Phillipsons.

"We were nervous about sending him there at first," says Judith. "We didn't like the word 'hospice'. It was like we were abandoning him to a hospital ward. But the minute we walked through the door it was fantastic. They were so, so precise about every aspect of Lewis's life. It was: 'What do you call his teddy bear?', 'What duvet does he like?' They attend to every detail.

"We stayed that first time but we are so confident with the staff there now that these days we're happy to leave Lewis there for a few days, especially with a hospital next door."

Keith agrees. "I never, ever realised the value of a full night's sleep before. It also means that Judith and I can spend a little time together and have nights out. Small things like that just mean so much."

Lewis himself, clearly highly intelligent and never short of an opinion or a witty one-liner way beyond his eight years, says he enjoys his time at Butterwick. Chatting in their pleasant home, the family share a few laughs and some memories about the hospice with Lewis.

But listening to the family's account of the last eight years, you begin to get an idea of what they have been through.

Like the time Lewis nearly died when the family were on holiday in Cumbria. "Lewis was by the pool and he just stopped breathing," recalls Keith, a fireman.

"They cleared the place in seconds flat. I remember working on Lewis's heart and giving him the kiss of life with this 16-year-old pool attendant who was fantastic. She was great but then, as soon as the paramedics arrived and she could stop, she burst into tears. There was a paramedic there from Liverpool who, I believe, saved my son's life. He could use equipment which the ordinary paramedics weren't able to use. It was the scariest time in our lives."

Not long afterwards Keith and Judith had to decide whether to allow Lewis to undergo an operation which, if successful, would enable his back to be straightened, allow him to sit up properly and aid his movement. But, if it went wrong, Lewis, then just five, would spend the rest of his life on a ventilator and life-support until the moment came to switch it off. It would be a living nightmare and one they had seen other parents endure at Carlisle Hospital.

"In the end it was no choice really, we had to give Lewis the chance of the operation," says Keith. "But there's no way we could ever have imagined it would be such a success. He was sitting up in a few days when it should have taken months and months of hard work. The difference in Lewis has been unbelievable. Judith and I are shocked when we see the pictures of him before. It also means we don't have to move him in bed through the night. That means we, and Lewis, have more sleep which is incredibly important."

Life and death situations have taken their toll on Judith and Keith. But it is the unrelenting, everyday worry that most people couldn't dream of, which Butterwick Hospice helps them - and Lewis - through.

Judith, a part-time shopworker, explains the daily stresses of her family's life: "Lewis wears a ventilator mask in bed but if he vomits he can't remove it and it could kill him. It has happened and we've managed to get there in time, but the thought is always there. Then there's the fact that Lewis really needs 24-hour care. He needs to be toiletted, needs constant observation, needs full-time help.

"Just going out can be hard. People stare and sometimes ignore him no matter how many times he says 'excuse me' when he wants to get through a doorway or whatever. We've often worried if we've neglected our Marie, who's now 22 and married. But she really has been like another mother to Lewis.

"Of course there's been times when Keith and I have been under strain. So many parents we've met like us have split up, a definite majority. You naturally put thoughts of what you do together to one side when you have a sick child. Butterwick Hospice has helped us cope, helped us have a life."

The conversation in the Phillipsons' home turns to other stories from Lewis's short history. Stories about how a nurse noticed something wasn't right just days after Lewis's birth, about high-speed races to hospital when Lewis has been taken ill and about how Lewis's condition has changed, often for the better.

Sitting in his electric wheelchair, Lewis, usually transfixed with video games and electronic gadgets, listens intently. "I've been learning about my life here," he says. "I didn't know hardly any of this stuff."

But talk of the future is a harder topic for all the family. In the coming decades, doctors expect to be able to treat muscular dystrophy to the point when it will appear to be cured. But for Lewis that day will certainly come too late.

"You don't really think about the future much," says Judith. "There's so much to deal with day to day. But I do sometimes think, 'How are we going to move him when he's a teenager or in his 20s, how are we going to cope?'."

Keith ponders the future more deeply. Naturally, the fact that Lewis will not survive his condition weighs heavily on his mind. "But every time I get home, Lewis says or does something that gives me a lift," he says. Right on queue Lewis pipes up: "But why don't you ever seem to have enough sweets when you get back."

That raises a laugh, but sometimes it takes more than humour for families like the Phillipsons to face life. Sometimes it takes places like the Butterwick Hospice.

* Butterwick Children's Hospice helps more than 300 children and their families like the Phillipsons across the North-East and North Yorkshire and relies entirely on charity. It needs more than £500,000 a year to operate. If you can help, contact David or Kirsten at the Hospice on (01642) 624231.