‘Am I going to die, Mum?’

The Naughton family: all three boys have a deadly disease. Picture: Derek Mc Auley

What, when you know he has a terminal illness, do you tell your eight-year-old son when he asks if he is going to die?

Paula Naughton has three boys, one aged eight and the others identical twins, who are all going to die of the same deadly disease.

Archie, aged 8, asked her as they lay on a bed together after having blood tests: “Mummy, am I going to die?”

Paula said: “Archie’s name means courageous and truly bold — bold as in brave — and he has had to live up to his name.”

Archie and his brothers Isaac and George, who live at the family home in Roscommon town, were diagnosed on the same day in 2012 as having Duchenne’s muscular dystrophy (DMD). It is a neuro-muscular disease which is fatal in all cases and sufferers rarely live past their late teens.

Paula, 46, said: “He asked me in the February when we were lying on the bed together and chatting and we had seen a lot of people.

“He asked me: ‘Mummy am I going to die?’ Of course that isn’t a question that you ever want to hear from one of your children, ever.

“And it’s just very, very difficult to think what do I say.”

She told Miriam O’Callaghan on her RTE1 show Saturday Night with Miriam: “I explained that we’re all going to die but you know you have a problem with your muscles, and we know that they are silly and they don’t work properly.

“We’re going to find something. We’re going to try and help you and the other children.”

Since then, Archie’s condition has deteriorated. Archie’s father, Padraic, 45, said: “Each night we see the depreciation in his overall mobility. He is walking more on his toes rather than flat-footed.

“We sometimes have to carry him up the stairs at night. We are feeling very helpless and hopeless at times.”

Paula said when they learned of the three boys’ illness: “We would really have liked to hide in a corner and cried and cried, but that is not going to help our children and it is not going to help other people’s children.”

Family and friends have organised a trust called Join Our Boys to create awareness and fund research into the condition.

There are an estimated 200,000 children worldwide with DMD - 99% of them boys - with 112 known cases in Ireland.

More information is at HERE 


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