CSHE suffers pain every second of every day but Emma Fogarty still has a special reason to celebrate her 35th birthday this week — after getting the all-clear from cancer.
The Co Laois woman was born with the cruel skin condition known as EB, a genetic disease that results in blistering of the skin and mucous membranes.
Babies born with the illness are often described as “butterfly children” due to their fragile skin.
“I’m in agony all the time,” admits Emma, who wears four layers of bandages to cover sores across 80% of her body.
About two months ago, a new and very aggressive open wound appeared on her ankle.
“It just refused to heal. We tried different antibiotics, creams and bandages — nothing worked,” explains Emma.
“Then it spread down into my heel. It looks like a very severe burn.”
The brave charity worker — Emma is a patient ambassador for EB support group DEBRA Ireland — was admitted to St James’s Hospital in Dublin for tests.
“What most people might not realise is that people with EB are more susceptible to developing cancer as they get older,” explains Emma.
“So when they told me I was having a biopsy I feared the worst.
“After the longest few days of my life, we finally got good news just last week that I had been given the all-clear.”
It was second time lucky for Emma, who had a cancerous growth removed from her heel when she was in her early 20s.
Now back in the family home at Ballyroan, Co Laois, she is cared for by her parents Patricia and Malachy and a team of healthcare visitors.
“I won’t lie to you, I am screaming and crying every day with the pain,” says Emma, who also has a younger sister Catherine (24).
“This new wound is just an added burden. It’s left me bed-bound for most of the past two months.
“It has to be cleaned and debrided with what I describe as a medical version of a Brillo pad. This has to be done every day and it’s excruciatingly painful.”
Emma’s devoted mother Patricia, who administers medication through a tube in her daughter’s stomach every two hours, says it has been heartbreaking to see her condition worsen.
“Emma’s quality of life has definitely deteriorated in recent years and it’s awful seeing her in such horrific pain.
“I feel guilty leaving the house to do anything normal, to be honest, because why should enjoy myself when she is suffering so badly?”
Neither she nor her husband Malachy, a recently retired teacher, had never heard of EB before Emma got her diagnosis shortly after her birth in Kilkenny Hospital.
“I remember the doctors telling me our daughter had some skin missing but they whisked her off to Crumlin before I got to hold her properly,” recalls Patricia.
“Maybe I was half out of it with drugs, but I said to them ‘ah sure, the skin will just grow back.’ I hadn’t got a clue.”
Patricia did not listen when doctors advised her to go home and rest and not to visit her newborn daughter in Dublin.
“Can you imagine? Of course we went straight to the hospital. We wanted to see our baby.”
In Crumlin, Patricia and Malachy were told that Emma might not live beyond a week and it “might be better” that way.
“It was shocking to hear that but we were determined from the start to prove the doctors wrong and help Emma lead a normal life. And she has.”
Indeed, their daughter has blazed a trail for EB sufferers in Ireland, not only attending mainstream primary and secondary schools but going on to study a Third Level business and marketing course in Limerick.
Emma — whose fingers became fused together due to her skin condition — also learnt to drive in a specially adapted car and passed her test, the first “butterfly child” to do so in Ireland.
Her bravery was rewarded with a Hidden Hearing Hidden Heroes Award in 2016, alongside mum Patricia, who was also honoured at the ceremony for her round-the-clock care of her daughter.
Despite her ongoing pain, Emma wants people to understand that she still wrings joy out of life.
“You might look at my existence and think it’s torture. And it can be. But I grab happiness where I can.
“I love doing events for DEBRA Ireland, and we’ve had great support from celebrities like Colin Farrell and Johnny Sexton.
“And music is one of my great passions. It brings me great comfort.
“I got to attend P!nk’s RDS concert — one of the few times I managed to leave my bed in recent weeks — and she was so amazing that I actually forgot about the pain for a while.”
As for her 35th birthday this Tuesday, Emma is determined to celebrate.
“I am the oldest person in Ireland living with my form of EB and only the fourth person ever to make it into their 30s. So we will do something special for sure.”
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