Meet the wonderful Nugent family – Ruaidhri, his mum Amanda, her sisters, and his cousins who all live with the painful genetic skin condition Epidermolysis Bullosa, also known as EB.
Each month we shine a spotlight on a different family-centred Irish charity as part of our Charity of the Year series. This month, we’re showcasing the great work of DEBRA Ireland.
The Nugent Family’s Story
Amanda and her sisters were never diagnosed with EB. For all their lives, Amanda and her four sisters managed blistered feet and hands themselves, never knowing what was causing these painful blisters. All of them were sporty and loved football. So, they’d put on two pairs of socks and tie up their boots.
“My sisters and I played Gaelic football all our lives, all five of us in the same women’s team,” says Amanda. “We’d wear two pairs of socks over our bandages and squeeze our feet into our boots – then we wouldn’t feel any pain till after the game. Afterwards we’d come home and burst the blisters.”
When Ruaidhri, Amanda’s little baby boy arrived into the world, Amanda saw the blisters on her baby’s skin. She knew immediately that her son had the same condition she and her four sisters did. It broke her heart.
Getting a Diagnosis
Several months after his birth, Ruaidhri was diagnosed with EB Simplex. EB Simplex is one of the major forms of EB, that causes the skin to be very fragile and to blister easily. Now Amanda and her sisters had a name for what they had all lived with.
EB is an exhausting battle, and new mum Amanda worried for her little boy.
“I didn’t want him to crawl, because I knew it would damage the skin on his knees and hands,” says Amanda. “But it was upsetting to see him getting blisters on his feet, which made walking painful for him.”
However, with her family supporting her, Amanda was determined not to let EB control her little boy’s life. Always thinking of her son, Amanda shows incredible strength and resilience in remaining positive through challenging times.
Growing Up with EB
“If you asked me what I would change about having EB, I wouldn’t change a thing for myself. It means I know what Ruaidhri is going through and I’m so happy to know this”.
Despite EB, Ruaidhri is an active, happy boy, and Amanda is keen not to restrict his play.
“It’s easier for me because I know exactly what he’s going through,” says Amanda. “As you grow up, you learn your limits. So, I have a good sense of how much to let him do, and when to stop him. Ruairdhri’s a trickster, he’s inquisitive and he’s always laughing. He loves to ride his bike – and we make sure he’s free to play!”
Ruaidhri’s cousins also have EB. He’s sad for them, but he says at least they’ll understand each other and what they can and cannot do. This is truly how this amazing family take on EB – together.
Support from DEBRA Ireland
The Nugents are part of the DEBRA Ireland family, the organisation which supports families with EB. After Ruaidhri’s diagnosis, Amanda was put in touch with DEBRA Ireland, and she says the support she found was amazing.
“We never knew that there were so many people with blisters, never mind a support network, too! We were able to chat over a cuppa and they answered any questions that we had and offered additional information and support.”
There is currently no cure for EB, but it’s DEBRA Ireland’s mission to give families with EB hope – hope of a life free of pain, and hope of a life where dreams come true. DEBRA aims to transform lives for families like the Nugents, and thanks to the amazing community of people who donate and fundraise for DEBRA, this is made possible.
The Nugent family are one of the 300 families currently living with EB in Ireland. DEBRA Ireland keeps EB patients and families at the core of everything they do and aims to positively change their lives. The Family Support team at DEBRA Ireland offers everything from help with housing to medical issues to supportive company and kindness.
If you would like to speak to one of the Family Support Team members or would like to know more about DEBRA Ireland and the EB community, get in touch via email at [email protected] or visit their website.