The family of a terminally-ill child is devastated the hospice it relies on for respite care and support is facing closure.
Kathy Hemestretch, of Elm Drive, Hove, nurses her 15-year-old son Kieran round the clock. She said she would be lost without the help of Demelza House children's hospice.
Volunteers at the hospice, in Sittingbourne, Kent, have put out a desperate appeal for help after being forced to axe many of their services because of a severe drop in charitable donations.
Kieran is one of more than 300 terminally-ill children who visit the hospice with their families each year. Many of them come from Sussex, including 25 who live in the Brighton health authority area.
The teenager suffers from adrenoleukodystrophy (ALD), caused by a faulty gene. Early symptoms include behavioural changes, poor memory, dementia and difficulties with hearing, speech and vision.
He is now blind and deaf and Mrs Hemestretch cannot leave him on his own.
She used to visit Demelza House regularly with her eight-year-old son Pearse, especially at weekends because her husband Ian finds it difficult to take time off work, but now the hospice has been forced to close at weekends.
She said the hospice was the only one near to her home, which could save families from exhaustion by taking care of their terminally-ill children for several weeks a year.
It also gave family members a place to stay at together and provided support through music therapy, a pets corner and various activities for families.
Mrs Hemestretch said: "It's terribly important to us. I know everyone has been trying to raise funds for Leo House in Brighton, and we are totally behind that, but it could take years before we could use it and that might be too late for Kieran.
"We can get a rest at Demelza and we know we can leave Kieran in a place that feels like an extended family.
"Kieran is severely physically and mentally disabled and needs constant care. There are other facilities that offer respite care for children, but this is somewhere we can go as a family and get a break.
"They also offer emergency care for children if they fall ill and it's one-to-one care.
"What is also important - and God knows nobody wants to think about burying their child - if a child dies, they offer a private room for the family to go to.
"It's not a morgue or a hospital. It's a nice environment and they help you in any way they can. I don't want to imagine what we would do without it."
Demelza's volunteer fund-raiser Albert Pascall, who has worked with the project since it opened two years ago, said the hospice had lost about 50 per cent of its donations during the past six months.
He said: "Things are looking very gloomy at the moment. We are quite desperate. I don't know how much longer we will be able to carry on.
"We need £3,000 a day to run fully, and now, we have had to take three of our eight beds out of service.
"We also had to cut back to a five-day week and we can no longer take people at weekends, which is when most people need us.
"We had to make six people redundant last month. That included our chief executive officer Helen Carter. She was in charge of us all, but we just couldn't afford to pay her any more. We also had to let our weekend cook go.
"We have 300 families on our books and we used to offer them 20 days' respite. Now, that has been cut to four days which isn't much good to anyone."
He added: "There is no other children's hospice of this kind in the South-East of England."
Founder Derek Phillips, who set up the hospice in memory of his daughter Demelza who died of a brain tumour, said: "We had a big launch appeal to raise £5 million earlier this year, but it could take two years to raise.
"If someone would come along and give us half-a-million pounds, that would just about get us back to normal. But we need £1.5 million a year to keep the services going."
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