Laois EB patient Emma Fogarty has one wish for her 40th birthday

A brave Laois woman who lives with an incredibly painful skin condition, is defying the odds as she prepares to celebrate her 40th birthday, and to raise awareness for Debra.

Emma Fogarty from Abbeyleix is the oldest survivor in Ireland of Epidermolysis bullosa (EB) or Butterfly Skin.

From the day she was born, June 26, 1984, she has fought a painful daily battle with the incurable condition, which has caused her fingers to gradually fuse together.

She was born with no skin on her left foot and right arm. The skin she did have blistered at the slightest touch, hence the butterfly analogy for EB sufferers.

"When I was born with EB, doctors told my parents I wouldnt live for more than a week, and it would be better if I didn't, because life would be so hard.

"My parents had never heard of EB. They didn't know there were other people living with the skin blistering condition.
“But they let me explore and live my life as I should. Thats probably why I am who I am today."

"My parents never held me back. I loved cycling my bike. But one day I was riding around my house and took a corner too sharp, and over the handlebars I went.

“The skin was gone off my nose, my two hands, my feet and my knees."

Emma's parents were devastated. It is one example of what life with EB is like for many children, because EB makes skin so fragile.

Almost no one with Emma's type of EB lives to the age of 40. Eighty percent of her body is covered in bandages. Changing them takes four hours every other day and leaves her in agony.

In recent years, Emma's leg was amputated to halt the spread of cancer, a common disease to hit EB sufferers.

Emma is supported daily by her personal assistant and friend, Georgina Herlihy, and her family in Abbeyleix.

Over the years she has led challenges to raise hundreds of thousands for Debra Ireland, as well as spreading awareness.

Among her supporters are actor Colin Farrell, rugby player Johnny Sexton and influencer Trisha Lewis.

As she approaches her milestone 40th, Emma has one simple birthday wish.

"I want everyone with EB in Ireland to live the life they deserve to live.

"EB is so cruel but I truly believe no one is better placed than Debra to fight for a better future. The charity is like a family. Being connected to Debra makes me feel safe, because no matter how tough life gets, Debra is there."

Her charity is highlighting Emma's birthday and thanking her for her work.

“Living with EB has been relentless for Emma and for so many impacted by EB.

“Even now, almost no one with Emma's type of EB lives to see their 40th birthday. Together, we can transform the future for Emma and everyone with EB in Ireland.

“At every stage of her life, Emma has always been a fighter, never letting EB define her or hold her back. Against all the odds, she's about to celebrate her 40th birthday in June.

“When you support Debra, you support people like Emma and give them the chance of a longer, fuller life. Thank you.

“Always a fighter, Emma never gives up. Emma's birthday wish is to give everyone with EB the chance to live the longest, fullest life possible.”

See Debra.ie to donate to Emma's birthday fundraiser, or to seek support and learn more about EB and the charity's research.