Parents of boy with genetic muscle disease announce death of ‘adored’ son

The parents of three boys from Co Roscommon with an incurable muscle-wasting disease have announced the death of their “adored” eldest son.

Archie Naughton (16) was diagnosed with Duchenne Muscular Dystrophy as were his younger brothers, twins George and Isaac.

Duchenne Muscular Dystrophy is a genetic disorder that causes progressive muscle degeneration and there is no known cure for it. It affects a child’s ability to walk, usually when they reach adolescence.

[ Waiting for your children to die, knowing that it can happen at any time, is crushing’ ]

The parents of the three boys, Padraic and Paula Naughton, were told their children had the muscle-wasting disease in late 2012.

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The family said Archie had died in the care of the “exceptional staff” in the coronary care unit at the Mater Hospital, Dublin. They described him as “adored and irreplaceable” and a “much loved brother” to his younger siblings. A death notice said Archie would be “very sadly missed by his heartbroken family,” his friends, neighbours “and by all those who supported him throughout his illness”.

[ ‘Our children were going to die and there was nothing we could do about it’ ]

His funeral mass will take place on Monday at the Sacred Heart Church, Roscommon.

The family had set up a trust called Join our Boys to raise money to provide the boys with the resources they need, to raise awareness of Duchenne Muscular Dystrophy and to raise funds for gene therapy programmes.