YOUNG HEROES
More than 500,000 caring kids help look after their siblings in their homes
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MORE than half a million children in the UK have a disabled sibling and provide vital support in looking after them.
According to , the charity which supports siblings of disabled children, they often get less attention from their parents and have more worries and responsibilities than their peers.
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Family breakdown is more likely in their homes, and siblings often miss out on their own schooling and plans because of their responsibilities.
More support at home is something The Sun is calling for with its Give It Back campaign.
We want the Government to pay back £434 million missing from social care services for families with disabled children.
Today, to mark , we speak to three amazing young people about what it’s like to help look after them.
'I can spot signs Luke is about to have a seizure and I'll stroke his hair until it is over'
IZZY Randall, 11, helps care for her younger brother, Luke, nine, who has severe epilepsy, and is deaf as well as partially sighted.
She lives in Upper Beeding, West Sussex, with her mum Liz, 49, a former secondary school teacher, dad Simon, 53, a former computer programmer, who are both now full-time carers, as well as their Collie, George.
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Izzy has previously been runner-up in the Sense charity awards for Young Carer of the Year. She says:
"I know my life is different to some of my friends but, for me, it’s normal. And I like my normal.
"Lukey is non-verbal, but I seem to be able to understand him.
"I play with him, and make sure he isn’t going to hurt himself by falling off the sofa. I know the signs that he is about to have a seizure and, when he "has one, I’ll stroke his hair or rub his feet until it’s over.
"We don’t often get to go out for dinner as people will stare at Luke. Sometimes, if we have a carer, then Mum, Dad and I can go out, but it’s sad that Lukey can’t join us.
"He can’t come to the cinema or do a lot of activities people my age can do but, once a month, I have a special day with one of my parents when we can do things like that together.
"If I could wave a magic wand to help my family, I would have more carers who understand Luke’s needs to help take the pressure off my mum and dad."
Mum Liz says: “I’m so incredibly proud of Izzy and how amazing she is with Luke.
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“Luke needs someone with him at all times, so when I’m making up his feeds or medicines, or even just going to the loo, I know I can depend on Izzy to look after him.
“Luke has at least one seizure a day, and we are up with him every night. There are times when Simon comes to bed at 2.30am, having been with Luke until then, and then I take over.
“I feel guilty that Izzy’s life isn’t the same as other girls her age.
“Caring for a disabled child doesn’t just affect the parents, but everyone else in the family, too. More support would help families have more quality time together.”
'I help Amelia by putting on her shoes or if she is too tired I tidy her bedroom'
GEORGE Beaton, 13, is a constant help to his sister Amelia, 11, a part-time wheelchair user who has an undiagnosed neuro-muscular condition and gastro-intestinal problems.
George lives in Knaresborough, North Yorks, with his mum Lisa, 45, a full-time carer, dad Martin, 51, an airline pilot, and brothers Harry, 19, and Jack, 16, who has severe autism.
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George who, like Amelia, has a feeding tube for a stomach condition, says:
"I help Amelia in a number of ways, for example going downstairs or putting her shoes on.
"Or I might tidy her room if she’s had a long day and is too tired to do it. When she has to go into hospital, I’ll reassure her and distract her by being silly.
"With Jack, I’ll sit and watch him play his computer games, which he likes. I know when he is starting to get anxious because he’ll get fidgety and I try to calm him.
"I think everyone’s lives are different. I don’t feel like I miss out on anything because of what happens at home."
Mum Lisa says: “George is very modest about the help he gives his siblings. He’s always so generous with Amelia, constantly giving her his things. They have such a wonderful bond.
“He sometimes helps me administer her medication and because she gets very weak, he is constantly fetching things for her.
“When Amelia was a baby and had to have a lot of physiotherapy, George would stroke her face to keep her calm, even though he was only two himself.
“Amelia has to go to Great Ormond Street Hospital, in London, about seven times a year.
“Last year, I felt very guilty because Martin was working early shifts and George had to get himself up and out for school, and take his own medication.
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“It’s a big ask for a child of his age to look after himself, but he never complains.
“In the past, Martin and I have been on our knees trying to get help for our children. We had to battle for an autism diagnosis for Jack as well as a school place and respite care. And now Amelia has grown out of her wheelchair and we are in the very lucky position that a charity has offered to help get a new one.
“What makes a huge difference to families such as ours is having regular respite care.
“To give parents and other family members a break is vital.
“It allows them to spend time with their other children, whose lives often have to fit around the one child’s special needs, and that’s so important.”
Give It Back
THE Sun is calling for more help for the one million families with disabled children in England and Wales.
Research shows that the lack of support is putting an enormous strain on parents and siblings.
Just four per cent of parents say they are getting the help they need.
More than half suffer from stress and depression due to a lack of support.
For siblings, the responsibilities of caring at home often results in incomplete homework, late arrival at school and even non-attendance.
Last October, Tory MP Robert Halfon released the findings of an 18-month study into the Special Educational Needs and Disability (SEND) system.
The committee found that too many young people with extra educational needs were not getting the right - or sometimes, any - help and families were in crisis.
Mr Halfon said: “Many children with special educational needs and disabilities are being let down day after day.
“Many parents face a titanic struggle just to try and ensure their child gets access to the right support.”
There is a funding gap of £434 million in social care for families with disabled children.
Together with 60 charities in the Disabled Children’s Partnership, our campaign Give It Back is asking the Government to rectify this in the next budget.
'Eventually I would like to go back into education and IT but I'm happy for now'
JAMIE King, 21, is the main carer for his sister Annabella, 15, who has the genetic disorder Prader-Willi syndrome.
They live in Coombe Dingle, Bristol, with mum Sarah Howard-Jones, 55, a school learning support assistant, and twins Francesca and Oscar, 13.
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Jamie, who works part-time as an assistant verger at Bristol Cathedral, says:
"It’s only recently I became Annabella’s official carer and I am getting some money now. I’m also able to work at my own job once a week.
"Eventually, I would like to go back into education and hopefully go into IT. But right now, I’m happy with our situation.
"I’m the other adult in the house and looking after Annabella comes first. I can still go out to the pub with my friends, I just don’t stay out late. It would help our family if Annabella could go to school.
"Mum is finding it impossible to get her into a specialist school. It’s a lot of stress for Mum and I worry about her sometimes. I look up to her because she does so much for us all."
Mum Sarah says: “I’m a single mum. A couple of years ago, as a part-time worker, I was really struggling financially.
"Prader-Willi means Annabella has uncontrollable excessive eating, severe learning difficulties and feels no pain, so she could burn herself and not realise. She needs to be supervised all the time. Jamie and I are on duty 24/7.
“Despite this, her condition doesn’t qualify for Disability Living Allowance. We had respite care but, ironically, that was taken off us because we were seen to be coping so well!
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“But Annabella has a lifelong, life-limiting condition and nothing will change that. I now work full-time but I’m only able to do that because Jamie looks after her. I’m so grateful to him but I also feel guilty that he’s being held back.
“When I was his age, I’d left home, had a degree and was working. He can’t do that at the moment. This is not what I’d have wanted for him.
“If I could find a residential home for Annabella, she would be well looked after and Jamie could get on with his own life. But everything is such a battle.”
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Gogglebox's Steph and Dom support The Sun's Give It Back campaign after Gov swipes £434m from disabled kids
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