Meath hosts largest family fun day for 'butterfly skin' community

Over 200 people came together in Meath as part of the biggest gathering of Ireland’s 'butterfly skin' community to date.

An average of 300 people in Ireland live with epidermolysis bullosa (EB), the inherited and extremely painful skin condition.

Also known as ‘butterfly skin’, it is caused by missing proteins between the skin layers, often resulting in painful blisters at the slightest touch or contact.

More than 200 people from the EB community across Ireland came together for two days of connection, fun and friendship at the Pillo Hotel in Ashbourne and Emerald Park on June 20–21.

“This event is now firmly established as one of the highlights of the Debra calendar and our Summer Extravaganza was the biggest and best yet," said Alejandra Livschitz, Head of Communications for Debra, the national charity supporting those living with EB.

“There's something about being in a room where you don't have to explain anything - where the bandages, the questions and the careful hugs all just make sense.

“That's what this weekend is about - connection, kids being kids and parents finding people who just get it.”

On Saturday, attendees gathered for an afternoon of research talks, including a presentation from two members of the Debra International Youth Council.

Lena Riedl from Austria and Ida Steinlein from Norway shared their experiences of living with EB and highlighted the work young people are doing to advocate for the community on a global stage.

“Lena and Ida’s presentation was a reminder of just how much the next generation of the EB community has to say, as well as how valuable it is for young people to support each other across borders,” said Ms Livschitz.

“Families in the room said hearing directly from young adults living confidently with EB was one of the most moving moments of the weekend.

"A huge thanks to SMBC Aviation Capital, whose generous funding supported the Summer Extravaganza and will continue to do so over the next two years.”

On Sunday, the fun continued at Emerald Park, with rides, a petting zoo and attractions for every age and ability.

The friction of walking or standing for long periods can often affects the feet of those with EB.

From mobility support and rest areas to a dedicated quiet room and Queue Assist passes, Debra ensured everything was in place so that families could enjoy the day in the way that worked best for them.

For more information on EB, visit debra.ie.