A Dublin mum who lost her son to an excruciatingly painful genetic skin condition relives his final moments as she pleads for extra resources to help other families dealing with the disease.
Maria Fynes, 63, lost her eldest child Aaron to a condition called epidermolysis bullosa (EB). The boy was among the first children in Ireland diagnosed with the disease and lost his battle for life when he was just 16.
He died in 2001 but the mother-of-five recalls his agonising final moments with perfect clarity. “The last few days were terrible because his sight had worsened and the painkillers weren’t having the same effect,” she said.
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Maria recalls keeping a vigil next to his bed at the hospital, watching him get weaker and weaker. “I asked him: ‘If you could go somewhere where there was no pain, would you go?’
“He turned to me and asked: ‘Can you come with me, mammy?’
“I would have given anything to go with him, but I answered: ‘Not yet son, but I will someday. Your nanny and granddad are there, so they will look after you’.
“And he replied: ‘Alright mammy, I’ll go then’.”
Even before these final moments, Aaron’s condition brought him incredible suffering. He was born with no skin on his right leg and right ankle, and he had large fluid-filled blisters on his chest.
Doctors did not believe he would live long. When the nurses tried to feed him his first bottle, the skin on his tongue and roof of his mouth ripped away. And so, Aaron was fed through a tube in his nose and Maria learned how to gently feed him milk with a spoon.
Every day prior to his death, he would scream in agony when she changed his bandages. This was unimaginably harrowing for the young mother. “Aaron would fight me,” she said, “most of the kids do, and after that, your heart would break.”
Changing bandages every day is tough on parents and children, she said. This is why she wants to fight for other families to have extra supports for other parents whose children have her son’s condition.
“If a nurse comes in to do that, it is such a relief,” said the mother-of-five. “Aaron might be gone, but EB is still here.” Nurses are not always able to call out to help families with the bandage changes however, due to a chronic nursing shortage.
Maria, originally from Portmarnock but now living in Ballyboughal, set up EB charity Debra Ireland alongside her husband Val because they didn’t want another child to suffer the way Aaron did. Their charity is now backing its Christmas appeal for additional supports, including home nursing hours, for 300 families in Ireland.
Maria said the festive season is a particularly poignant time of year because her child loved Christmas, and she hopes the public donates to Debra Ireland in his memory. “I’m urging people to give what they can to support Debra Ireland, because I don’t want any other family to go through the same trauma we did at a time when EB was unknown and there was absolutely no help available."
For more information about Debra Ireland’s Christmas appeal, and how to donate, see debraireland.org .
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