Boy hopes drug trial can help save big brother

Daniel Kirk, 11, and brother Milo, 15, both suffer from muscular dystrophy. Picture: Jane Barlow
Daniel Kirk, 11, and brother Milo, 15, both suffer from muscular dystrophy. Picture: Jane Barlow
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A BATTLING youngster taking an experimental drug designed to halt muscular dystrophy has told how he hopes it will save his older brother’s life.

Daniel Kirk, 11, hopes his efforts will help big brother Milo, 15, who is also afflicted with the muscle-wasting 
condition.

The P7 Wardie Primary pupil has been chosen to trial a potential miracle cure developed in the US. The drug Ataluren works by producing a protein essential to muscle strength.

The boys are also being supported by gran Eileen McCallum – better known as Liz Hamilton from BBC Scotland soap River City – who has founded a charity offering support to families affected by muscular dystrophy.

Daniel said he’d like nothing better than to help the big brother he looks up to so much.

He said: “If it works, Milo can go on it and it will help him. I hope for that a lot.”

Daniel receives the drug at the Royal Victoria Hospital in Newcastle, a national centre of excellence for muscle 
diseases.

Milo, who tested positive for muscular dystrophy as a four-year-old, is not taking part in the trial as he is wheelchair-bound.

It was only open to non-wheelchair users – even though Daniel’s condition has now advanced to the point where he himself now requires help getting around.

Successful movie make-up artist mum Sarah Fidelo, 46, said the new drug could massively extend her boys’ life expectancies.

Sarah, a successful make-up artist who has worked on major films including Ken Loach blockbusters Sweet Sixteen and Ae Fond Kiss, said: “The doctors hope it will slow down the progress of muscular dystrophy.

“It could increase the boys’ life expectancies – maybe by years.”

Sarah has managed to successfully juggle her career in film-making with looking after her boys.

But she said that nothing could prepare her for when she first discovered Trinity Academy pupil Milo had developed the condition.

“I started to think something was wrong with Milo when he was about two or three,” she said.

“He had trouble getting up and down the stairs, and wasn’t developing in the way other children were.

“When the diagnosis came through I was just completely shocked. It was a horrible time. But, with the trial, things are more positive.”

Milo is also looking to the future with new hope. “If they didn’t think the drug would work, they wouldn’t be holding another trial – so it’s very hopeful,” he said.

To donate to the Eileen McCallum Trust, visit www.eileenmccallumtrust.org

Disease starts in childhood

MILO and Daniel both have Duchenne muscular dystrophy (DMD) – a neuromuscular condition caused by the lack of a protein called dystrophin.

The disease starts in childhood and may be noticed when a youngster has difficulty standing up, climbing or running.

It is a serious condition that causes progressive muscle weakness. Only around 100 boys with this form of muscular dystrophy are born in the UK each year.

Life expectancy depends on the degree to which a person’s muscles are weakened as well as how much the heart and lungs are affected.

At present, average life expectancy for people with DMD is 27 years but this can vary depending on the individual and the severity of the condition.

Death is often the result of respiratory complications, such as a severe chest infection, when a person’s lungs are already weak.