Love, loss and Hope

In Carmen and Barry Daniels's elegant living room two girls are at play. Surrounded by dolls, toys and the miscellany of family life, eight-year-old Bliss and Hope, four, are clearly doted on by their parents.

Given this happy domesticity, it is hard to imagine that Carmen and Barry have suffered more sadness than any family should have to bear. Outside the living room hang portraits of two other children, Rhys and Charly, the son and daughter Carmen and Barry lost to the rare, genetic brain condition Batten's disease, five years ago. Rhys and Charly died either side of Christmas 1998 when Rhys was a few weeks short of his eighth birthday and Charly had just turned 10.

Each Christmas, Barry and Carmen struggle with the memory of their children's decline while making the festive season as special as they can for their daughters. This year, though, they will bear their sadness a little more easily.

For 2004 is also the year the Daniels celebrate the 10th anniversary of the charity they formed when Rhys and Charly were ill. Initially designed to raise funds for their children's care, the Rhys Daniels Trust now provides accommodation all over the country for families whose children are hospitalised far from home. Between Bliss, Hope and the charity, the Daniels find the strength to carry on.

"The charity is like therapy," says Barry, 45, speaking from the family's modern four-bedroom home in Great Dunmow, Essex, and clutching a chattering Hope on his lap. "The joy every time we open a new house is wonderful. It makes you think Rhys and Charly were here for a reason."

"You have to find the positive in the negative," Carmen, 36, agrees. She is the tougher of the two, selfcontrol led and pragmatic to Barry's rawer sentimentality. "What happened was our loss, but it's been somebody else's gain. Knowing you're helping other sick children is so satisfying."

Barry and Carmen knew each other as children - Carmen's aunt is married to Barry's uncle - but only fell in love when they met again when Carmen was 18. She was working in a bar and Barry, then 28, had just returned from Los Angeles where he was working as a musician. They married two years later and Barry became a computer technician. The birth of the children completed their domestic bliss. "A boy and a girl - everything a family wants," Barry explains.

But, unknown to them, Barry and Carmen both carried a defective gene, giving them a 25 per cent chance of having a child with Batten's disease. The illness causes a gradual deterioration, leading to blindness, deafness, dementia and, almost inevitably, death. The chances of having a child with the condition are one in 100,000.

In 1991, Charly, then three, had her first seizure. "She was sitting in her chair and suddenly it looked like she'd fainted," Carmen recalls. "To start with, nobody knew what was wrong. It took 10 months of tests, and all the time she was having seizures. Once, she collapsed into a radiator. It was awful. We wanted to wrap her up in cotton wool."

Carmen and Barry recall the day they discovered the black truth. "The neurologist at Great Ormond Street Hospital said there was nothing he could do, " Barry says.

"It was impossible to comprehend. The most difficult thing was going back home and seeing Charly looking completely normal. We just couldn't take it in that she was going to die."

Further tests revealed that Rhys, then not even one, also had the condition. Though perfectly well, he was what Barry calls "a time-bomb waiting to go off ".

Immediately Barry started researching, determined to save his children. It quickly became apparent that for Charly, who was already showing symptoms of the disease, there was no hope. But for a presymptomatic Rhys, things seemed brighter. At a conference in America, Barry heard about bone-marrow transplants which had shown some signs of alleviating Batten's disease in animals.

The procedure was controversial and experimental, but Bristol's Royal Hospital for Sick Children agreed to do it. Seven months of gruelling treatment ensued.

"We sat in the transplant ward as he was having his first chemotherapy treatment, thinking we were feeding him poison," Barry remembers.

"It made him so sick. We just wanted to take him home, but we kept telling ourselves we were doing the right thing. We had no choice."

Tragically, the treatment failed, as did a second transplant the following year. With dreaded inevitability, Rhys began to show signs of the disease. Unlike Charly, his symptoms advanced rapidly.

"It was exhausting," Carmen recalls. "The worst time was Christmas 1997 when we thought we were going to lose Charly. They were both very sick. There wasn't a single full night's sleep. They could hardly communicate with us and we were in and out of hospital. We felt so helpless."

During Rhys's treatment, Barry and Carmen decided to have another child. "We knew the baby might have Batten's but we wanted a family and decided to take the risk," Barry recalls. "Prenatal testing meant we'd have known if Bliss was affected and we could have a termination. It was a nerve-racking experience, but thankfully she was clear of the disease.

"In the end, we would have struggled without Bliss. She was our ray of light. It would have been difficult for us even to contemplate going on without her."

Later, tests on an unborn Hope would reveal that she, too, was free of the illness.

One of the hardest things was explaining to Bliss what was happening to her brother and sister. She was just three when they died.

"We told her that when a person dies it is like a butterfly breaking out of a cocoon," Carmen says. "Some families seem ashamed of children's illness. They hide it away and don't talk about it. We've always been the opposite and I like to think that's helped set Bliss up for life."

In 1997, with two desperately ill children, Carmen and Barry made a decision no parent should ever have to make. The next time their children fell seriously ill, instead of yet again being rushed to hospital, they would be allowed to die peacefully, at home.

"Their quality of life was so poor," Carmen recalls. "We didn't want them to die in hospital and be carried off in a container. Although it was a painful decision, it wasn't difficult to make."

Although Charly was semicatatonic throughout 1997, she hung onto life with a tenacity that astonished doctors, and it was Rhys who died first, on 21 December 1998. Carmen's greatest regret is that she was out the day her son died.

"Not being there will haunt me for ever," she says. "But Rhys was my little man and I didn't wish him to live any longer than he chose. The time was right for him to go and I must accept that."

Charly died in her parents' arms in February 1999. Barry had stayed home from work to be there. "Charly took her last breath as we held her close to us and she died very peacefully," he says.

Despite being prepared, even having picked plots at the cemetery, Barry, in particular, fell apart.

"Suddenly there was a huge void in my life," he recalls. "I was consumed with grief. I didn't allow myself to accept it. I had to find something outside of the house and our relationship that would keep me going and I dealt with it by immersing myself in the charity. I worked all the hours God sent. In the end, Carmen nearly threw me out. Our relationship was definitely on the line.

"We didn't know each other through that time. We'd been so focused on the children we'd had no time for each other. We had to reestablish our relationship and we didn't know how to do that."

Carmen reacted differently. "For me, it was a great release. I wouldn't have wanted to lead their lives and I was glad their pain was over. My own feelings were unimportant. I knew we had to get on with things."

It was the birth of Hope, shortly after Charly's death, that pulled the couple back together. Today their lives are a cacophany of charity commitments and children.

While Barry works full-time for the Trust, Carmen is an administrator for an insurance company, helping with the charity whenever she can.

It is very successful and Barry has expansion plans for its 10th year. Plans to produce an anniversary brochure and host a Valentine's Ball in February are already in full swing and Barry is looking to recruit more staff.

Their life is awash with new experiences. They can go out with friends, take holidays - they are in Florida this Christmas - and relax in their home. Bliss is approaching the age at which Charly died, so her parents are, for the first time, learning what it is like to have an older child in the house.

This is a family determined to survive. Underneath a sideboard in their dining room are several large glass frames containing photomontages of Rhys and Charly. The children are pictured on holiday, at play, in their parents' arms.

Most of the pictures were taken when they were well, but a few show them in the advanced stages of illness, their faces expressionless and slack, their bodies lacking the vigour children should have by rights.

When they redecorated their home, Barry and Carmen took the pictures down. They've decided they probably won't go back up. "The montages were up until six months ago," says Carmen.

"They are good to look at, they are good memories, but you don't have to look at them every day. Charly and Rhys are part of our lives now. They were put on this earth for a reason. You don't need to keep looking at the past to know that."

For more information on the Rhys Daniels Trust, call 01992 570550 or log on to www.rhysdanielstrust.org