Despite being born with the skin blistering condition epidermolysis bullosa (EB), Aaron was the happiest child you’d ever meet. He very seldom complained at all. He never said, ‘why am I like this and not like them?’
But every single day, his mum Maria sat for hours removing bandages, bursting blisters, and wrapping him again, with all the gentleness she could. They had no home nursing care. And the pain Aaron felt when they changed his bandages was unbearable. It kept him alive. But it was pure agony for them all.
The only form of treatment for people living with EB is painful bandaging of the skin to prevent infection. Because of a lack of reliable home nursing care, this can often fall on the parents.
Imagine being mum, nurse and carer every day because EB means you have no choice?
Will you help children like Aaron by donating?
“Your best bet is to get Aaron baptised. We don’t think he’s going to live.”
Those were the words Maria and Val heard just a few days after their son Aaron was born. It was September of 1985, and almost nothing was known about EB in Ireland. When Maria and Val were finally able to see their tiny baby, they were shocked. He had no skin on his right leg or left ankle. And he had large blisters on his elbows and chest.
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.
Nursing care – for excruciating bandage changes – is one of the most important supports families living with EB need. But with a nursing shortage, they need your support more than ever.
On his last night on earth, Aaron looked over at his mum and said, “I have some words stuck in my chest. I’m asking Jesus to help me. And he’s not listening to me. All them tablets doctors have me on – they’re not working.”
Maria bent close to Aaron’s face and spoke softly to him. “Aaron , If you were to go to a place and you never have a pain again and you can get out of that wheelchair and run around, would you like to go?”
“Yeah ,” he said. “You’ll come with me, though?”
And Maria answered, “I can’t come with you right now, but I’ll follow on. Your granny and your granddad will be there. They’ll mind you until I get there.”
Aaron died the very next day.
Maria and Val set up DEBRA Ireland because they didn’t want another child to suffer the way Aaron did.
That’s why we’re asking you to please send a gift today so we can continue the work they started.
Thank you for your Christmas gift!
EB takes a tremendous toll on parents every single day. But your compassion this Christmas will provide care for children and their families like Aaron’s across Ireland.
DEBRA Ireland will be there through every obstacle and challenge. And with your support, DEBRA will always be there… for as long as they need us.
But we can’t do it without you. Together, we can make sure that no family will be left to face EB alone.
