Award for hero Emma and mum

Ballyroan EB sufferer and her carer mother recognised at the Hidden Hearing Heroes national awards

Award for hero Emma and mum
By Lynda Kiernan

Laois daughter and mother Emma and Pat Fogarty were honoured with national bravery awards this week for their courage and strength in battling Emma’s rare and very painful skin condition, with a smile.

Emma, from Ballyroan, has a severe form of the 'butterfly skin' disease epidermolysis bullosa (EB) which leaves 80% of her body covered in open wounds.

The 32-year-old won first place in the Courage Over Adversity Award at the Hidden Heroes Awards Ceremony in Dublin while her mum was acknowledged as an Unsung Hero, for her work caring for Emma.

One of only 300 people in Ireland with EB, Emma has to be bandaged from head to toe to protect her from everyday life.

"If someone walked into me in the street, or bumped off me, the skin would automatically tear off my arm; 80 per cent of my body is covered in bandages," she explains.

Emma has to have her bandages changed every second day, an extremely painful process that takes several hours.

All her life Emma and her mum Pat have endured this excruciating process together.

When she was born, Pat was told Emma would not beyond live two weeks but her mother battled on to ensure Emma attended mainstream school and graduated from university.

Despite her condition and recent ill-health, Emma, a former mortgage advisor, is determined to enjoy life and publishes a life and fashion blog entitled My Fragile Life.

"With any disability, if you have some hardship but you you don't have to sit in a corner. You can live your life," said Emma.

She also campaigns for others with EB as a Patient Ambassador for Debra Ireland - the charity which provides support services for people living with the distressing genetic condition.

"Emma and her mum Pat are the very epitome of Hidden Heroes," said Judith Gilsenan, head of fundraising for Debra Ireland.

"Both are charming and quietly spoken but behind that gentle exterior they are the toughest of all superwomen. Their mother-daughter bond is an example to us all.

"It's hard to fathom but somehow the strength of their relationship seems to be able to set aside all the trauma related to EB and you'd think they hadn't a care in the world,” said Ms Gilsenan.

The Hidden Hearing Heroes Awards is an annual ceremony that recognises the achievements of people, young and old, who have made a significant contribution to Irish society, in their community, workplace, family or through sporting excellence.

This year 21 people and organisations were recognised.

Follow Emma's blog at