“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.
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 firstname.lastname@example.org or visit their website.