Labours of love by a hidden army of carers

SALMA Akram had dreams of going to university and becoming a physiotherapist. She even started on a degree course but had to pull out to care for her daughter Zainab, six, who suffers from muscular dystrophy.

Salma is one of the unpaid army of people who sacrifice their own lives and dreams to care for loved ones. She is 25 years old and a single mother with two daughters.

"I did start at university but Zainab became poorly and ended up in hospital. I realised then that it was just too much. My girls are my life and they come first. It is just the way it is. I want to cherish every moment I have with Zainab."

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Salma realised quite early on that Zainab was not developing in the same was as her older daughter Laila, seven.

"It was at the six-week check at the doctors that I realised that she was really quite floppy. They said it might be because she was four weeks premature, but eventually we referred to the hospital where a biopsy confirmed that she had muscular dystrophy."

Salma knew little about the condition which is a muscle- wasting disease which leaves children like Zainab unable to walk and struggling to do basic things in life that their peers do.

Salma, who moved back to Sheffield when the girls were little, has to do everything for Zainab who has very little muscle movement at all. She cannot walk or sit unaided and is totally dependent on her mother and big sister.

"It is hard on Laila, but most of the time she is brilliant and I call her my little helper."

Zainab is quite big for her age and so Salma uses a hoist to help to lift her. She has support from family and friends and carers who come in to help. But she has had to fight for adaptations to her home and to get Zainab into mainstream school.

"She was in a special school but there is nothing wrong with her mentally and she just wasn't stimulated enough. Zainab loves mainstream school. She has loads of friends and is such a happy child considering what she goes through."

Due to the weakness of her muscles Zainab is prone to chest infections which often leave her hospitalised every couple of months. For the last year she has been put on a ventilator at night which helps her to breathe and has reduced the number of infections.

She is fed through a plug directly into her stomach and Salma has to carry out physiotherapy and nasal suction a number of times a day. Although Salma would like a job and a career, due to the erratic nature of Zainab's illness it is impossible.

The family rarely gets away on holiday and Salma has had one break away with her sisters in seven years. She has received help and support from the Muscular Dystrophy Society with information and also equipment.

She does get some respite when Zainab goes to the Bluebell Children's Hospice and health and social service carers to come into help, but her life is dedicated to her daughters. But she never resents her life.

"Of course I would have liked a career, but it just wasn't the right time for us. I do get down sometimes but there is no point. Zainab needs to be looked after and she is the world to me."

This week is Carers Week and the launch of a campaign to call for more support for the nation's carers to allow them to have a life of their own.

A spokesman for Carers UK said: "The support that carers give to society is vast; they save the state an estimated 87 billion – equivalent to the cost of running the NHS. It's time for carers, in turn, to receive the help they need and deserve.

"Because of the time and energy they give to looking after their loved ones, carers are rarely able to pursue a life of their own.

"Carers give so much to society: it is essential that they do not sacrifice their own lives as a result."

Ruth Mellors cares for her big brother Andrew, but not in the traditional sense.

She doesn't get him dressed, or cook his tea. What she does is much more fundamental.

Ruth gives Andrew emotional support.

Andrew, 13, has Asperger's syndrome, which makes it difficult for him to make friends and fit in.

He can become frustrated and in the past has often taken it out on his sister.

But Ruth, who turned 12 last week, has a special bond with her brother

and will defend him against any bullying and tries to help him socialise.

"From even as young as the age of five Ruth knew what Andrew wanted.

"At one stage he didn't really speak and she would speak for him," explains his mother Margaret from Harrogate.

"He would sometimes lash out physically and hurt Ruth, but now she understands that it was all part of his Asperger's."

Ruth spends all her time looking out for her big brother.

She has encouraged him to get the bus and also walk part of the way to the school where they both now go.

She tries to get him to come out with her and her friends.

"She does try to explain to her friends about Asperger's, and sometimes she does find it difficult and wants to be on her own with her friends," says Margaret.

"She is always looking out for him. If anyone upsets Andrew then they have to answer to Ruth."

Ruth is helped by Harrogate Young Carers who have given her a respite from the responsibility she has taken on looking after Andrew's welfare.

"It gives her the chance to be a child herself without worrying about Andrew."

Andrew has become less erratic since he was introduced to music at school. "He is a really talented musician and now he lives for his music.

"If something upsets him he now takes himself off and plays his instruments.

"All he wants now is to be in the London Symphony Orchestra."

But Margaret is worried about the future and what Ruth might be tempted to give up by giving emotional support to her brother.

"She wants to go in the Army but I am worried that she won't want to go abroad for fear of leaving Andrew.

"We are really hopeful that he will be able to live an independent life, but I do worry that she will take on too much and not live her own life."

Carers Week runs until June 20. For more information visit www.carersweek.org

Russell Watson is performing at Harewood House, Leeds in a summer concert for the Muscular Dystrophy Campaign. Tickets start at 27.50. To find out more visit www.muscular-dystrophy.org/thatglorious

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