Inspiring show of dedication by young sisters

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LUCY and Alice Deyermond talk about their brother Sam fondly as they describe how he likes to hug them or sit on their knees.

But while the 12-year-old is often affectionate, he is also prone to violent outbursts – and they are sometimes on the receiving end.

His aggression is just one of the things the sisters have to cope with as young sibling carers.

Sam has Smith-Magenis Syndrome (SMS), a rare genetic disorder that causes behavioural problems, learning difficulties and sleep disturbance.

He needs around-the-clock supervision, so Lucy – his twin – and Alice, 15, spend much of their time helping mother Jacquie to care for him at their Harrogate home.

“We play with him and entertain him,” says Alice.

“At lunchtimes he throws his food if he’s in a mood or won’t eat so we have to make sure he’s nice and calm.

“His bed sheets always come off because he moves a lot so we put them back on – and he likes to be tucked in.”

Lucy adds: “If he’s in the bath we have to make sure nothing happens like he doesn’t pour in extra water and flood it – and we have to brush his teeth for him.”

A third of young carers look after a brother or sister and among the problems they often report is a lack of quality time with their parents – something Mrs Deyermond, 45, often feels guilty about.

“I feel bad because I can’t do things with them that other people do. He runs our life,” she says.

“It dictates a lot of what we can and can’t do. They don’t get the attention from me that their friends at school get.”

The demands of Sam’s condition mean family shopping and cinema trips are a rarity and a holiday abroad is impossible.

Going out with their friends is a struggle as Mrs Deyermond is not always able to pick them up, and Sam’s behaviour can make it difficult to bring people home instead.

“Sometimes he doesn’t like them and won’t talk to them, sometimes he wants to play with them and cuddle and kiss them and pick them up,” says Alice.

Lucy adds: “Not many of my friends – but some – are scared of what he’s going to do and they go upstairs as fast as they can.”

The girls, who attend St Aidan’s High School in Harrogate while Sam goes to a special school in Boston Spa, have also found it difficult to juggle studying and caring – something many young carers experience.

“We used to be so late sometimes because he wouldn’t get dressed,” says Alice.

“Sometimes you can’t get all your homework done because you have to talk to him or distract him – especially if its a long piece that you have to concentrate on.”

The GCSE student adds: “I’ve got to do my coursework at home. If I don’t get that done it puts me back on everything.

“Our head of year knows but individual subject teachers don’t and you feel a bit stupid when they say why haven’t you done your homework.”

Lucy adds: “People think you’re looking for sympathy.”

The family have found a lifeline in Harrogate-based Carers Resource, which runs a youth club for young carers as well as organising days out and breaks such as a recent sailing trip Lucy went on.

“It gives you a break from what we have at home,” she says.

“It’s relaxing because you can just chill out with your friends and be free and say what you feel instead of being careful at home.”

The charity also runs a GO sitting scheme, a free childminding service that enabled Mrs Deyermond to do the shopping while Sam was at home during half-term.

“I find it difficult going to the shops when it’s the holidays. I can’t take him because it’s impossible,” says the hospital volunteer.

“We haven’t got a large network of family here so it’s difficult.”

She adds: “The girls have to give up a lot. There’s a lot they can’t do.

“They are very good with him, very calm and very patient.

“There are times I’m sure they both wished it was different but I think they do really well.

“They’ve never known life as other people have it.”

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