Thursday 8 December 2016

Despair as terminally ill boy excluded from clinical trial

Published 22/02/2016 | 02:30

The Naughton boys - twins Isaac and George with big brother Archie - who all suffer a terminal form of muscular dystrophy
The Naughton boys - twins Isaac and George with big brother Archie - who all suffer a terminal form of muscular dystrophy

A family whose three young boys were diagnosed with a terminal illness suffered a further setback after their 10-year-old son was turned down for a clinical trial - because he was too old.

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Roscommon siblings Archie Naughton (10) and five-year-old twins Isaac and George were diagnosed with Duchenne Muscular Dystrophy on the same day.

Mum Paula said her eldest son Archie was "getting worse by the week now" and the family had pinned their hopes on the trial.

Sadly, the family were informed he cannot even be considered because he turned 10 in December.

"They might consider him in the future, but of course, by then, he will unlikely be able to meet the other criteria attached to the trial, for example, being able to walk 300 metres in six minutes," she added.

The mum-of-three said the setback left the family feeling defeated for the first time since the boys' diagnosis in 2012.

"It is hard to explain what it feels like to live, work and try to 'function' in a constant haze of grief and fear," she added.

Ms Naughton said the family continued to campaign for trials in Ireland. She acknowledged that trials may fail or cause serious complications but said the family were so "utterly desperate", this was their only hope.

She is calling for greater services for families "until there is a treatment for every single person with this catastrophic disease".

Around 120 children have DMD in Ireland.

For more information see www.joinourboys.org

Irish Independent

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