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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.

Every day with EB was a struggle for Aaron
Maria with her beautiful baby boy Aaron

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.

Aaron survived for 16 cherished years.

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.

Aaron with his family at Christmas.
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Did you receive your latest issue of DEBRA Ireland’s Autumn Newsletter? It is not one to miss!

READ YOUR NEWSLETTER HERE…

In this issue…

We are delighted to share with you, because of your incredible kindness, Casey and her family have moved into their new home – a home beyond their wildest dreams!

We also share with you how you are helping to create change. Read about DEBRA’s Patient and Parent Ambassadors, Emma and Liz, who have spoken out brilliantly for the need of improved EB services.

We also welcome Joanna Joyce, our wonderful new Advocacy and Policy Manager, who shares her passion and experiences working in DEBRA Ireland and why advocacy is so important.

Your caring gift will transform the lives of families living with EB. Thank you.

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Your Donation Transforms Lives

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Imagine what it’s like when you pull a bandage that’s stuck to a wound. Now, imagine being a little 7-year-old child like Maria and having bandages removed from wounds on your entire body – sometimes every day.

That’s the reality of living with the painful skin blistering condition EB. Maria was born with a severe form of recessive dystrophic EB – one of the most painful and traumatic skin diseases imaginable. It’s evident in the bandages on her arms and legs, the wounds on her face and the gloves she wears on her hands to delay the inevitable fusing. DEBRA Ireland support children like Maria every day.

Will you help ease Maria’s pain by donating?

Maria is like many other children her age. She loves drawing. She loves playing. And she is very excited to be starting school in September. From the time Maria was born, mum Gunita has been her primary caregiver. Administering excruciating, heart breaking bandage changes for her daughter. Giving her supplements in her feeding tube every evening. 365 days a year, without fail, and without a break.

Gunita doesn’t have support from her family. They live too far away.

“We don’t have grannies or sisters, or in laws. We don’t have them here. So, we have zero help. All these seven years, especially the last two years, I’m isolated with no conversations. It’s bad, so it was so important to have DEBRA.”

Gunita,
Maria’s Mum

But, DEBRA Ireland has been there for Gunita since Maria’s first days in hospital when she was born. During the pandemic, although we weren’t able to have in-person visits, a family support team member was always at the other end of the phone when she needed them.

Starting school is a huge step for Maria and her family. They are all so excited – including Maria, but for her mum, Gunita, the thoughts of her little girl starting school frightens her. Maria is moving from a school equipped to handle almost every medical need she has, to a school where, up to now, there was nothing in place.

Gunita worries if the school will be equipped to handle all Maria’s medical needs? Will everyone in her classroom be gentle with her? Will Maria be safe?

That’s why we really need kind supporters like you so we can help more children like Maria.

The DEBRA family support team worked with the school for two years to prepare them for Maria. They created information booklets for Maria’s principal, teachers, classmates and their parents as well as a very special, personalised book which will be given to Maria’s classmates so they can get to know Maria and learn about EB.

“DEBRA has helped us move forward – everything improves bit by bit. Even if Maria’s condition doesn’t improve, it just improves our sense of life. They help us whenever we need anything.”

Thank you!

EB takes a tremendous toll on parents every single day. But your compassion will provide care for children and their families like Maria’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.

Yes! I care! 

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Title:
Fundraising Administrator

Reporting to:
Individual Giving Manager (currently Head of Fundraising & Marketing)

Type of Contract:
Specified Purpose (Maternity Cover), Full Time, 37.5 hours per week

Salary:
€24,000-€30,000, commensurate with experience

Location:
DEBRA Ireland is located at Butterfly Cottage, Clanwilliam Terrace, Dublin 2.

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Title:
Individual Giving Manager

Reporting to:
Head of Fundraising & Marketing

Type of Contract:
Full Time, Permanent, 37.5 hours per week.  Open to 4 day working week.

Salary:
€54,000-€60,000, commensurate with experience.

Location:
Flexible working (a mix of home/office based) is facilitated and embraced.  Candidates must be resident in Ireland.  DEBRA Ireland Office is based at Butterfly Cottage, 8 Clanwilliam Terrace, Dublin 2

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