Interview: Eileen McCallum, actress

VETERAN Scots actress Eileen McCallum has taken on more roles than even she can begin to remember in six decades treading the boards.

She's played it for side-splitting laughs in The Steamie, brought soap opera to Scottish screens first in Garnock Way, later in Take the High Road.

Now she lives on the most crime-ridden, colourful street in the land in River City, where as nippy pensioner Liz Buchanan, she hit her "son" over the head with an urn containing his father's ashes and left him for dead.

Think of any well-known Scots television drama from the last few decades - Taggart, Rebus, Take the High Road - and more than a few Royal Lyceum Theatre productions, and the chances are, Eileen's been there.

Now 74, she might be expected to be withdrawing to a more sedate pace of life settling into her senior years in her Edinburgh home, enjoying her grandchildren.

Instead, Eileen's busy embracing a new high-profile role, one that is heartbreakingly real.

"Milo and Daniel are as well as can be expected," she says with a subtle sigh, referring to her precious two grandsons, handsome and happy lads who so closely resemble their devoted gran that there could be no mistaking the family link.

"Milo has an electric wheelchair now. Of course, he's not like other kids, you can't say to him "off out and play now", but he can get around. He goes to Trinity Academy, he has good friends and he's enjoying it.

"And Daniel. He's getting pretty unsteady on his feet. He's eight and a half, he's in primary four," she battles to disguise the tinge of sorrow in her voice.

"He's finding it hard to get around but he's very feisty and he tries to keep up. He is very fond of football, he has a Spain strip and he wants to be a sports reporter when he grows up."

The brutal facts of the boys' long-term prospects, however, are carefully set aside for the time being.

Now, Eileen is concentrating on doing all she can to ensure there's help today for children like them, growing up with the nightmare muscle-wasting condition, Duchenne muscular dystrophy.

Yesterday's River City filming schedules were hastily rearranged so she could join campaigners and MSPs at the Scottish Parliament to launch a new cross-party committee report which reveals woefully inadequate support for children like Daniel and his brother Milo.

It was a damning indictment on care. The whole of Scotland, the report found, is served by just two charity-funded care advisers, patients and families have a "sometimes non-existent level of service from diagnosis onwards" - as patients age, services dip down even further.

Of course, Eileen already knew most of that - when her daughter, Sarah, tried to convert her Granton home to accommodate her growing sons, she received a fraction in financial aid than she might have had she lived in England.

When she asked in 2008 for some support to help her cope, she waited over a year to be told she'd receive just four hours of care a week.

All of which is why later this month, the River City actress will become the high-profile face of a new charity trust set up to raise funds which will help ease the financial burdens for parents of children with Duchenne muscular dystrophy.

In tribute to the role she's already played highlighting the heartbreak of the genetic condition, the charity will bear her name: the Eileen McCallum Trust.

"I'm very glad to be involved," smiles Eileen.

"The hope is that once we have funds, Duchenne families can tell us what they need, a piece of equipment or a wee break, and we can help.

"All the equipment people need is so ridiculously expensive. Hoists, special toilet and bathroom facilities, things that make life easier don't come cheap."

Of course, none of this is a role she ever expected to take on.

Eileen was unaware that Duchenne muscular dystrophy lurked in her family's genetic pool until six years ago.

Milo was a lively enough toddler, but Eileen's daughter, make-up designer Sarah, saw him struggle to manage the same physical tasks as other tots.

A diagnosis took several years, by which time Daniel had arrived.

As the family reeled from Milo's devastating condition, Daniel's test results could not have been worse.

"It was completely out of the blue," nods Eileen.

"There was nothing whatsoever in our background to suggest this was going to happen. It's been hard.

"It's a kind of gene mutation. They call it a "point" mutation here, in America they call it "nonsense" mutation. I think that pretty much sums it up."

A genetic quirk of nature with devastating effects. The gene is passed through female carriers but affects only boys.

As the condition progresses, sufferers' muscles swell and joints become restricted, they are confined to wheelchairs and simple tasks such as holding a fork or rolling over in bed become difficult.

Eventually heart and breathing muscles begin to fail.

Most boys with Duchenne struggle to survive beyond their teens, but Eileen's not dwelling on that. Instead, she's busy packing up her home of 15 years in Bellevue to move nearer to Sarah, 43, and the boys in Granton.

It'll make life easier when later this year single mum Sarah heads to London to work with Caroline Quentin on a new production of Life of Riley and it's gran's turn to look after the boys, even grappling with a hoist to help Milo into the bath.

"I do what I can do," says Eileen, whose own health took a knock last year when she was prescribed beta blockers to treat cardiac arrhythmia.

"I can do the hoist. It's a nuisance but we carry on talking about something else and get on with it.

"We take each year as it comes," she adds.

"You have to hope for technical advances, medical advances, but what's important is that the boys are happy, and they are."

Yet she's seen with her own eyes how much better life could be for Duchenne families - recently, she made a documentary on how Denmark cares for Duchenne families, and found the differences in care and support "a revelation".

"The downside is high taxation, but no-one I spoke to had an issue with that. They saw that this is the thing to do with taxes, look after people.

"Besides," she adds sadly, "these boys will not be a tremendous drain on anyone in their old age. Let them have help now when they need it. Give them a better life."

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No cure for degenerative muscle disease

Duchenne muscular dystrophy affects approximately one in every 3500 boys - around ten boys with the disorder are born each year in Scotland.

There are about 250 boys with the disorder living in the country at any one time.

Duchenne muscular dystrophy is passed on by mothers through a faulty gene in the female X-chromosome.

Girls can be affected if they inherit two faulty copies of the X-chromosome - one from each of their parents.

However boys only need to inherit one faulty X-chromosome, from their mother, to develop the disorder.

Diagnosis usually occurs before the age of five and patients normally need a wheelchair by the time they are ten years old.

They become progressively weak, the condition eventually leading to a complete loss of strength and mobility.

There is no cure.

Yesterday a cross party group of MSPs launched the Mackie Report, which calls for dramatic improvements to muscle disease care and services.