In today’s The Herald Emma Fogarty (DEBRA Ireland Patient Ambassador) shares her story and talks about what it means for her to have passed her driving test and who she visited on her first road trip.
When Emma Fogarty passed her driving test, she made history. The 30-year-old is the oldest surviving Irish person with a severe form of a painful disease which makes her skin as fragile as a butterfly’s wing.
No other woman with her particular form of epidermolysis bullosa (EB) has ever managed to get a driving licence.
Those who are aware of just how difficult it is to live anything approaching a normal life with EB will be staggered by Emma’s achievement.
Her disease caused her to lose the use of her fingers when they fused together. She can no longer walk. Her new car was altered to allow her steer it with her fist.
“I’m absolutely thrilled to have passed my test. I’ve wanted to drive since I was 18,” said Emma.
EB is a cruel disease which makes her skin layers vulnerable to being torn away from her body with very little pressure. Bump into Emma and she can be badly bruised and blistered; even turning over in bed can inflict new wounds.
Emma’s bandages need to be changed every two days. She cannot eat and is fed by a tube directly into her stomach. At times, painful blisters in her eyes force her to keep them closed for days.
In February, Nissan surprised Emma with a new Micra which she can use free of charge for a year.
She soon began taking driving lessons and has now passed her test in Portlaoise at her first attempt.
One of her first trips to celebrate her licence was to drive from her home in Abbeyleix to the grave of her good friend Robert O’Neill in Limerick who died from EB at the age of 28.
“Robert loved cars and always encouraged me to take up driving. I told him at his grave: ‘I did it, I did it!’,” she said.
Another cause for Emma to celebrate was the feat of reaching her 30th birthday.
“When I was born, my parents were told I would not live a week. And that I would be better off if I didn’t live. But here I am,” she said.
“I learned my determination from my parents, Malachy and Patricia. My family and my friends always have my back.”
Emma has been careful not to fall down in recent years but, an hour before her 30th party at her home, she fell and skin sheared off her left foot. The wound blistered in seconds.
“But I was determined to go ahead with the party. I had reached 30 and I wanted to celebrate,” she said.
DEBRA is organising an EB Awareness Day on October 24 when people will be asked to wear a transfer tattoo of a butterfly and will be invited to upload a photo onto social media with the hash-tag ‘Release Your Butterfly’.
Over the years, Emma has charmed many stars to help fund raise, including actor Colin Farrell, rugby star Jonny Sexton and Love/Hate’s Robert Sheehan.
The next oldest surviving person with Emma’s form of EB is aged just 10. There are around 300 Irish people with some form of EB.
“My big motivation in life is helping children with EB. I know what the children have to deal with,” Emma said.