PLEASE HELP THE CHILDREN

These are the chilling words which will introduce a new appeal for a children's hospice.

Today thousands of leaflets are beginning their journeys into Sussex homes asking readers to imagine life without their child.

The appeal received its first boost early this morning when Carole Dale, of Birling Close, Brighton, donated £5,000 in memory of her husband.

Keith Dale was a lecturer at the University of Brighton and died suddenly in 1996.

Brian Slater, president of Brighton Lions Club, said: "It's a difficult question, but one day it could be your family or one that you know that is faced with this problem.

"If a family is told that their child is terminally ill and that there is no cure, the reality for them is the role of a 24-hour-a-day nurse.

"The parents can feel isolated, tired and frightened. Their work can suffer and they can fear losing their jobs.

"Other siblings can feel neglected and could start getting in trouble at school."

The hospice appeal wants to create a place staffed by people who understand the emotional and physical strains on families with terminally ill children.

Highly qualified staff could give special palliative care to sick children and it would be a place where staff keep on caring, even after a child's death, helping the family to readjust.

Brian said: "We organised a brain-storming session to think up a project idea to mark our golden jubilee in 2001 and this was what we came up with."

The Lions Club is launching the hospice appeal in 1999 because it expects to take a year to find a suitable site in Brighton and a year to draw up the necessary plans.

It hopes to start building in April 2001, but now the crucial first step is fund-raising.

Brian said: "We knew it had to be a very special idea, one that would take several years to complete.

"A children's hospice called the Leo Hospice was suggested and everyone instantly agreed that it was an urgently needed service in the area."

Other Sussex hospices are battling to cope with an overload of young patients.

The James House children's hospice at Heathfield does not provide respite care, where staff look after youngsters to give their families or carers a break, and at present has only one nurse.

The Snowdrop Trust is a similar scheme in Chichester and currently has 40 children on its books.

Brian said: "I think the Leo Hospice will make a world of difference to families with terminally sick children in Brighton and Hove."

Brighton and Hove Council leader Lord Bassam has been quick to back the scheme.

He said: "I fully support this imaginative and innovative project by the Brighton Lions.

"The hospice will provide a much-needed service for the local community."

The Lions' leaflets will go to thousands of homes and businesses throughout Sussex to encourage people to start organising fund-raising events.

Brian said: "Whether it is a coffee morning or a beetle drive, a garage sale or a barn dance, we need people to get involved and start making this project a reality.

"The list of possible events is as long as your imagination is wide and all people need to do is write in for a copy of our fund-raising pack.

"We will be awarding bronze awards to people who raise £250, silver for £500 and gold for £1,000."

Brian is keen to point out the difference between adults' and children's hospices.

He said: "Leo House is not a place where children go to die. It will exist to provide children aged nought to 19 and their families with respite care.

"This is done by providing the whole family, including siblings, with a place where they can stay for a few days, where they know there is help on hand 24 hours a day and a place where they can forget the daily chores and spend time together.

"Leo House will be a place where the quality of life can be enhanced for the whole family - even if it is for a few days."

It is usual for a children's hospice to be a base from where other forms of care and support are provided.

Brian said: "Outreach teams will provide palliative care at home, practical support in providing special aids and ensuring all appropriate benefits are being received."

There are no central records of how many children have terminal or life-limiting conditions so it is impossible to gauge the number living in Sussex.

Brian said: "I recently spoke to Beryl Rupson, leader of the paediatric home care team at the Royal Alexandra Children's Hospital, and asked her whether she was frequently asked by parents if hospice facilities were available.

"Her immediate answer was yes and she said she could fill a 12-bed hospice tomorrow and keep it filled for a long time."

OUR 18 MONTHS WITH MARTHA

AFTER the birth of their beautiful baby girl, David and Annie Kemp were led down a lonely path which no parent of a healthy child could ever understand.

On November 16, 1993, they lovingly cradled their new daughter Martha in their arms for the first time.

But only hours later the tiny girl suffered a violent fit and was taken to the special care baby unit at the Royal Sussex County Hospital in Brighton.

After a brain scan and weeks of tests, Martha was finally diagnosed with a rare illness called Aicardi Syndrome.

David said: The prognosis meant she would be profoundly and physically disabled. But the worst moment was when we were told she would be unlikely to live to the age of two."

In the following months Martha suffered from continuous chest infections and several times came extremely close to death.

David said: "Last May we had actually said prayers for her but then we watched in awe as almost immediately she started to recover.

"That was such a significant time that we look back on it with confidence that God wanted her to be around longer."

But life was destined to be a physical and emotional struggle.

Martha's chest problems meant monitoring, suctioning and physiotherapy on a daily basis, coupled with disturbed nights

Her medicine schedule started at 7.15am, ended at midnight and included more than 11 doses - on a good day.

David said: "It was taking its toll on us. People used to comment that Martha slept a lot and how easy it must be to look after her.

"The fact was, we could not leave her for a minute. This was all part of the lonely path we found ourselves on."In August David and Annie fitted an oxygen concentrator at their home in Furzecroft, Hove.

David said: "Our mobility was more limited than ever. Any time we went out we had to take a cylinder on the buggy shelf and a suction machine.

"Even something as mundane as shopping trips became impossible."

In January a routine X-ray showed Martha's heart had enlarged. It was an indication of heart failure, and from that point on a new and precious phase started for David and Annie.

David said: "Suddenly we had the chance to love her even more, savour every delicious moment and even think about her death, which has left us surprisingly clear of regrets and with a sense of completeness of her life, though we miss her terribly."

On June 6 1995 Martha died peacefully in her parents' arms.

Looking back, David says he feels privileged to have known Martha but he wishes there could have been more resources available to ease the immense pressure on his family.

Now David is backing Brighton Lions Club's £3 million vision for the town's first children's hospice.

He said: "I think it is hard for people with healthy children to understand the lives of families with extremely ill children.

"Even the sipplest of chores can become impossible. Shopping for clothes becomes a lengthy process involving oxygen cylinders under buggies and medical supplies.

"Then there is finding someone you trust to watch the baby every second."

David has discussed the plans for the new hospice with Brian Slater from the Lions. He said: "Often families find it hard ever to leave the house because that is where all the necessary medical equipment is.

"Spending a few hours in another environment, surrounded by trained staff who understand all your needs, would relieve the burden of the parents' constant responsibility for a couple of hours and let them relax.

"Expert medical advice and emergency equipment would also give concerned parents a sense of welcome relief that their children are finally in the best hands."

HOW YOU CAN HELP

The Brighton Lions Club needs you to help raise vital funds for the Leo House Hospice Appeal.

There are plenty of ways to have fun and show terminally ill children you care.

Use your imagination to conjure up great ideas for charity events like fancy dress football matches, sponsored karaoke nights and line dancing extravaganzas.

Brian Slater wants to hear from people who are willing to give up a few hours of their time to organise cash-boosting events.

Every penny counts and contributions from collection boxes in pubs and restaurants are just as valuable as large donations raised by charity balls or concerts.

Make a real difference to a child's life and contact the Brighton Lions Club for a fund-raising pack.

People are also invited to write in for a Buy A Brick cash card.

These cards are designed like a brick wall and people can pay a £1 to buy a brick of the hospice.

When a card is full, the owner will return the £50 to the appeal and the money will be used to fund the building materials.

Write to The Leo House Appeal, Brighton Lions Club, Lions Dene, The Deneway, Brighton, BN1 5AZ

To make a donation, make your cheques out to the Brighton Lions Leo House Appeal, sort code 20-12-75, account number 40956023, and pay them into Barclays Bank or send them to Jakki Phillips, The Argus, Argus House, Crowhurst Road, Hollingbury, Brighton, BN1 8AR.

If you are organising a fund-raising event please contact Jakki Phillips, appeal reporter, on 01273 544548.

Converted for the new archive on 30 June 2000. Some images and formatting may have been lost in the conversion.