MY STORY: BUTTERFLY SKIN SURVIVOR'S LIFE OF BRAVERY & PAIN

Emma's new book tells of health battle in infancy & finishing marathon with Colin

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WHEN Emma Fogarty was born with Epidermolysis Bullosa she was not expected to survive infancy.

Today, she is the oldest living Irish person with the condition, defying the odds with courage.

Known as butterfly disease, EB is a rare and excruciating condition that means the skin is as delicate as a butterfly's wing.

Laois woman Emma, 41, can no longer walk, and she lost the use of her fingers when they fused together. Her bandages need to be changed regularly, an agonising process which takes hours.

In 2024, she took part in the Dublin Marathon alongside her close friend and movie star Colin Farrell to mark her 40th birthday, raising almost €1million for EB charity DEBRA Ireland.

Now she has told the story of her extraordinary life in her autobiography Being Emma.

Here, in two extracts from it, she writes about what happened after she was born; and running the marathon with Colin.

BIRTH

When my mother, Pat, was pregnant with me, there was no need for anyone to worry. It was her first baby and things went along as normal. There were no warning signs, no unusual scans.

Labour went ahead with no alarm bells, nothing to cause any concern.

But as soon as I arrived into the world, all of our lives - my mother's, my father's and mine - were changed.

I was born badly wounded, with no skin at all on my arm or left foot, and they didn’t know why.

Then a nurse tried to feed me and the metal edge of her little nurse's watch hit off my cheek and pulled the skin off it. Just a normal smooth-sided watch - something every nurse used to wear - and it injured me so badly. My skin was like tissue paper.

That was my christening. Just Mum, Dad and the priest were there. My name, chosen quickly from the shortlist they'd hoped to mull over, was Emma.

Also by the time Nana Fogarty got there, the biopsy results had come back.