My boys could die before they're 20 - but I won't give up

As the consultant spoke, Paula Kerr felt utterly helpless. She sat in rigid shock as he told her that all three of her seemingly healthy, bubbly young sons had an incurable disease that would kill them.
Worse, she was powerless to do anything but “take them home and love them”.
Her three boys – bright Archie, now 12, and cheeky five-year-old twins Isaac and George – had a muscle-wasting disease which would slowly, surely and cruelly lead to eventual paralysis and death, in all likelihood no later than their early 20s.
This disease would obliterate her family before they’d barely left childhood and she, the one person in the world who wanted to protect them, could do nothing except watch.
“He talked about metal rods in the spine, the children not being able to breathe, then he put his head in his hands and said, ‘The last advice I can give you is take your children home and love them’,” she recalls.
“I thought ‘That’s the best we can get?’ The moment was like an out-of-body experience. I could hear everything but I was looking down at it, numb.”
The boys had been diagnosed with the biggest genetic killer of children in the world, Duchenne muscular dystrophy, a condition which causes loss of mobility then, as the disease ravages the body, paralysis.
Eventually, death is caused by respiratory or cardiac failure.
The sense of despair was like a lead weight for Paula, originally from Hampshire, who lives with husband Padraic and their sons in the Irish town of Roscommon.
Now, more than two years on, it affects her even more because of Archie’s increasingly rapid deterioration. He can only crawl up the stairs to bed at night and sometimes needs to be carried.
She sees how he can’t run like his friends, how he is forced to stand in goal during football games, and knows this is only the start of a devastating road which his little brothers will follow him along.
Archie wants to be a rugby player or a rock drummer – the twins a farmer and a binman. Paula doesn’t know whether to laugh or cry.
“We will slowly watch our children deteriorate and know that it will only end one way,” she says.
Trying to stop tears coming she adds: “Bedtime is the hardest. I cry every night because I know that the day which has just finished is, especially for Archie, his best day.
“With every passing day he gets weaker. That’s the urgency of the situation. Hope of him being able to play football and all the things he loves is more and more diminished.”
Yet remarkably, while Paula and Padriac still struggle under that weight, they are also fighting for hope – and refusing to give up.
They have set up a charity called Join Our Boys to push for research into treatment and eventually a cure for Duchenne muscular dystrophy.
They have raised more than £500,000 towards scientific trials which they hope can be held next year. This week, for their courage and effort, they won a Special Recognition award at the Irish Daily Mirror’s Pride of Ireland awards, sponsored by Lidl.
“People have gone home, loved their children, and mollycoddled them, but we have not done that,” Paula explains.
She insists she will continue to treat her sons as normally as she can for as long as she can, and not stop hoping that their lives can be prolonged - and one day a cure can be found, if not for her sons then for others.
"We want them to live, to be good people and know right from wrong. We discipline them, give them jobs to do.
"My ambition, my dream, is to have a photo on my mantelpiece of three strong men towering over me, standing, all able to make choices, to travel and do amazing things.
“I hope – I don’t know but I hope – it happens for them and every other child with this disease.”
Paula, 47, who along with her husband is a mental health nurse, says she guessed early that her sons had Duchenne muscular dystrophy.
It was during Archie’s recovery from meningitis in his early years – another devastating blow, though unconnected – that she first noticed one leg was lagging when he walked.
At first she put it down to his recovery but mentioned it to his paediatrician. She had also noticed that Isaac, then 18 months, was struggling to stand so she mentioned that too. He looked like an elderly man trying to get off the floor,” she recalls.
What began as just a regular medical appointment became a moment she cannot forget.
Examining all the boys, the consultant said there might be a problem with their muscles and recommended blood tests.
“That day in November 2012 is burnt into my psyche,” Paula says. “I even remember the smell of the hospital clearly, the smell of the hand sanitiser.
"But most of all I remember the look on his face. I felt panic, I just wanted to get out of there.”

With her nursing background, Paula had a good idea what the problem was.
After research online, she became increasingly convinced that her boys had Duchenne.
“Padraic told me I was wrong, he said it couldn’t be true – he said God wouldn’t let it happen to us when we have spent our whole lives helping other people.
“There was nothing I could say – I didn’t want it to be true. I wished I was being dramatic,” she says.
But the boys had their tests and the next day, when the doctor phoned to call her in, Paula says she knew from his voice that she was right.
“Archie was at school so we drove with the twins in the back to the hospital not speaking,” she recalls, starting to cry.
“I have never told this to anyone before, but I then turned to Padraic and said ‘Shall we just keep driving? To Galway? Into the sea?’
“Then we realised Archie wasn’t there and we couldn’t even do that. That was how desperate we felt. That was the level of desperation.”
The doctor confirmed the disease to the speechless pair.
“But he said he wasn’t an expert. We spoke of hope and miracles,” says Paula, who admits she still thought there was a chance something could be done.
“It was later, when their specialist told the parents all they could do was “love their boys”, that they almost reconciled themselves to doing only that.
It would, Paula admits, have been easy for them to give up.
“For weeks we couldn’t talk to anyone,” she says. “We tried to pretend things were OK. We were broken.
“The children seemed so well – that was the cruellest thing, even now.
“If you didn’t see Archie move you would never think there was anything wrong.”
She admits, voice faltering: “For me, now, I see life through a veil. Everything is slightly diminished, things are not as bright.
“That will never change until someone says there is a treatment.”
But Paula insists that she wasn’t – and will never be – ready to give up.
“When life deals you something like this you have to try to find a solution,” she says.
“The boys are our inspiration, especially on the battle-weary days.”
With a conference organised by the charity next month in Dublin – called Paving The Pathway To Treatment and Cure – she says she has to keep believing.
“Two days after the consultant, Archie caught me crying and he asked me what was wrong. Then he said, ‘Mummy, am I going to die?' When I asked him why, he said, ‘Because I have seen lots of doctors and you are upset.’
“It was a sobering moment. I said, ‘Your muscles don’t work properly but I promise Mummy and Daddy will do something that
will help.’
“He has never asked again, but sometimes he says, ‘Join Our Boys is going to help me and we are going to get some medicine.’ ”
Paula will carry on giving her boys all the love in the world. But with those words in her ears, she says, she will never stop fighting to protect them too.
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