Families thrown into crisis when a child is diagnosed with cancer sometimes find it tough to cope financially.

A North-East couple, who went through hell have set up a charity to help others like them. Health Correspondent Barry Nelson talks to the Simm family.

WHEN his baby son was fighting for life after being diagnosed with a dangerous form of cancer, the last thing service engineer Brian Simm wanted to do was go to work.

"He said it was no use doing the line of work he does because he couldn't concentrate and it would be dangerous," says his wife, Valerie Simm.

Financial pressures built up as the worried couple ferried their little boy backwards and forwards to hospital appointments - a distraction they could have done without and something they would not forget when they decided to do something in memory of their lost son.

Louis was only a few months old when his parents noticed a rash spreading across his body. At first doctors thought it might be a virus but after the rash worsened, a series of hospital tests eventually confirmed that their son had a large malignant tumour surrounding his kidney.

At first, the chemotherapy given to Louis seemed to be succeeding and his father, who services sprinkler systems in commercial and industrial premises, decided it was "safe" to go back to work.

But when the couple were told that the treatment was not working and their son was getting weaker, all thoughts of spending time at work instead of with their son went out the window.

"When Louis was rediagnosed with cancer Brian said if our son's life was going to be short, he wanted to be with him," says Valerie. Ignoring the mounting bills, Brian gave up work to spend all his time with his son.

Louis - a "real bonny bairn" - his mother says - was well enough to enjoy his first birthday party. "It was a fantastic party. All of his family and friends were there," she says.

At that time the family, from Gateshead, was hopeful that Louis would recover but when his second session of chemotherapy failed to reduce the growing cancer, they were given the news they were dreading. "The doctors told us there was nothing more that they could do for him so we decided to take him home."

In the last few weeks - as Louis's condition deteriorated - the family stayed together, visiting the seaside, local parks and a farm. The little boy's condition continued to go downhill and on Good Friday, 2002, Louis died in the arms of his parents.

After enduring every parents' nightmare the couple decided they wanted to do something in Louis's name which would live on and help others in similar circumstances.

"We talked to the charity Sargent Cancer Care for Children, which works with families where a child has cancer. When parents are told their child has cancer, the pressure is so intense that a lot can't go to work," says Valerie. "But even if your son or daughter is dying, you have to pay the bills and the mortgage, you have to keep a roof over your head."

They realised many other families were going through the same financial hardships they had experienced.

"Last August Brian said we should have a charity event. He spoke to his friends and we booked Birtley Catholic Club and sold tickets for Sargent Care," says Valerie.

On the night of the event they couldn't believe the response from friends, family and supporters. Exhilarated after a disco, karaoke and raffle raised £4,000 for Sargent Care, the couple decided to pursue their charity plans.

"Sargent Care do a great job counselling families in hospital but they can't help people who are facing financial hardship when a child is ill. That's where we thought we could make a difference," says Valerie.

The determined couple, still struggling to cope with the grief of losing their son, were almost deterred by the mass of paperwork needed to set up a charity. "You get a million and one forms to fill in, it looks like War And Peace," says Valerie.

Someone suggested they contact an existing charity for advice and after a few phone calls they were invited to the Redcar home of Martin and Debbie Neal, who set up the successful Katie Trust charity in memory of their daughter who died of brain cancer four years ago, at the age of six. "They were brilliant, they really helped us to understand everything," says Valerie. In May, 2002, the Louis Trust was successfully registered as a charity and, since January this year when the charity went live, it has supported families from all over the region. "We get requests from Sargent Care and if we are satisfied that they meet all the conditions, we can make a donation to help that family through their financial difficulties," says Valerie

So far the Louis Trust has helped families from Newcastle, Whitley Bay, Middlesbrough, Rowlands Gill, Northallerton and Choppington, Tyne and Wear, who are coping with a diagnosis of paediatric cancer.

"So far we have given cash to about a dozen families, including several from Redcar. We have helped people with phone bills and mortgage repayments," says Valerie. "A couple from Middlesbrough came to us because their car had broken down and they needed to get it back on the road. Newcastle is the regional centre for children with cancer and they need transport."

The amount given is relatively modest, varying from around £100 to a £250 maximum and, while they are happy to be helping families, the Gateshead couple are worried that funds are getting low.

"In the last few weeks, we have been very busy and I get a bit panicky that all the money is going out," says Valerie.

Last weekend she was doing her best to boost the coffers, with the help of friends from the Birtley area, spending all day packing shoppers' bags in return for a donation at Morrisons supermarket at Seaburn.

"We have got another big bag-pack coming up at Asda in the MetroCentre on December 20. We need loads of volunteers so if anybody could come along and help for an hour, we would be very grateful," she says.

Louis's sister, Lucy, seven, who was four when her baby brother was diagnosed with cancer, has been a source of strength for her parents.

"She coped remarkably well with what was going on around her," her mother says.

To make Lucy feel part of the charity, she is patron of the Louis Trust. "She's not old enough to be the treasurer so we made her the patron," says Valerie. "Now she tells us that she's the boss."

* For more information about the Louis Trust visit the website at www.louistrust.org.uk or telephone 0191 4915792