A mother whose son died from a painful genetic skin condition has recalled his heartbreaking last moments as she pleads for more support for other families with children suffering from the same condition.
Maria Fynes, from Dublin, lost her oldest son Aaron in 2001 to a condition called epidermolysis bullosa (EB), which causes fragile, blistering skin.
Aaron was one of the first children in Ireland to be diagnosed with the the rare condition and sadly lost his battle with it at the age of just 16.
But despite it being over a decade since his death, Maria still recalls her son's last moments vividly.
She told DublinLive : “The last few days were terrible because his sight had worsened and the painkillers weren’t having the same effect."
Ms Fynes also recalled a devastating conversation she had with Aaron while she kept a vigil next to his bed at the hospital.
She said: “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’.”
Aaron had suffered from the condition since birth and doctors didn't think he would live long after he was born with no skin on his right leg and right ankle and also had large fluid-filled blisters on his chest.
At first, he was fed through a tube after the skin on his tongue and roof of his mouth ripped away when nurses attempted to feed him his first bottle.
Eventually, Maria was able to learn to gently feed him milk with a spoon. But throughout his life, the condition left Aaron in extreme agony.
The mother-of-five recalled that he would scream out in pain when she had to change his bandages.
Describing how horrifying the condition could be for children, she said: "Aaron would fight me, most of the kids do, and after that, your heart would break.”
Changing bandages every day can be very tough on parents, which is why Marie is now fighting for more support for parents whose children have the same condition.
She said: “If a nurse comes in to do that, it is such a relief. Aaron might be gone, but EB is still here.”
Maria and her husband, Val, set up the charity Debra Ireland following Aaron's death after not wanting other children to suffer like he did.
Their charity is now backing its Christmas appeal for additional supporters, including home nursing hours, for 300 families in Ireland.
Maria said: “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."
