Leicester Mercury Carer of the Year Award: 'If anyone deserves an award, it's Emma'
The moment Emma Hallam's young son was diagnosed with a muscle-wasting disease, her life changed forever.
She gave up her high-flying job as a marketing director to look after four-year-old Alex, who, she was told, was suffering from Duchenne muscular dystrophy – a genetic disorder which only affects males and is incurable.
The strain of Duchenne which the youngster has is so rare – affecting under one per cent of sufferers – that current research into finding a cure would not help him.
So mum Emma, 38, and dad Andy, 41, of Rothley, set up the Alex's Wish charity in August to raise money to fund more research into the disease, as the main body of study is focused on more common strains and would not help Alex.
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"It wasn't really a difficult choice," said Emma. "I had a very stressful and demanding job which I loved but my son needs me.
"I plan my days around what Alex needs me to do for him. We want to raise money to try to help my son but also all the other children who may be suffering just like him."
Emma's dedication to her son and fund-raising for her charity – which has so far realised a total of £14,000 – impressed boxing club owner Carl Gunns.
Carl, who runs his gym in Birstall, nominated Emma for the special recognition award in the Mercury's Carer of the Year Awards 2012.
He said: "If anyone ever deserved an award, it's Emma. In fact she deserves a gold medal.
"Her drive and determination to help others is an inspiration to me and everyone who meets her.
"I am delighted the Mercury has given me the chance to nominate Emma."
Duchenne affects the gene which supports dystrophin – a protein which helps bind muscle together.
Without it, muscles are unable to maintain and repair themselves.
Most sufferers lose the ability to walk by their early teens and die in their late teens or early 20s.
Alex's particular strain is extremely rare.
The National Patient Register shows it makes up 0.6 per cent of the Duchenne cases it has on record.
Although the disease is still in its early stages, the youngster is already having treatment at Birmingham Children's Hospital. He sees a consultant twice a year, has scans on his heart and check-ups on his bone mass.
He also visits a paediatrician at Leicester Royal Infirmary every six months and has regular check-ups from nurses.
Rachael Startin, of Signature South Lodge care home, in London Road, Leicester, which is sponsoring the award, said: "I think it's very brave of Emma doing what she's doing and it's excellent that the Mercury is running these awards to recognise people for the work they do, whether it's for an organisation or for their own family.
"Being a care home, we recognise that care isn't the easiest thing in the world."
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