A mum who lost her son to a painful skin disorder recalled his emotional last words as she called for more help for other families. Maria Fynes' son Aaron died of the condition epidermolysis bullosa (EB) when he was just 16.
As reported by Dublin Live, the genetic disorder brought Aaron terrible suffering throughout his life. He was born in 1985 with no skin on his right leg or right ankle, and he had large fluid-filled blisters on his chest.
When nurses tried to feed him his first bottle, the skin on his tongue and roof of his mouth ripped away. He ended up being fed through a tube in his nose and Maria learned how to gently feed him milk with a spoon.
Doctors expected he would not survive for long. Every day when his mum changed his bandages he would scream in agony.
Maria, now 63, recalled their final moments together and Aaron's emotional last words. She said: "The last few days were terrible because his sight had worsened and the painkillers weren’t having the same effect.
“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.’”
Maria is now hoping to raise awareness of the rare condition and the distress it brings to sufferers and their families. She believes extra support should be provided to parents whose children have the condition.
Changing bandages every day was particularly tough she said. “Aaron would fight me,” she said. "Most of the kids do, and after that, your heart would break.”
“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.”
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," she said.
For more information about Debra Ireland’s Christmas appeal, and how to donate, see debraireland.org
