Incredible Laois woman marks a miracle birthday

AN amazing Laois woman is marking another miracle birthday, as she continues to defy the overwhelming odds she has battled all her life.

As she turns 41 on Wednesday 25 June, Emma Fogarty from Abbeyleix has beaten the life expectancy of people with an agonising skin condition by yet another year.  When she was born, she was not expected to live more than a week.

Famously described as “a warrior” by actor Colin Farrell, a close friend and strong supporter, Emma received over 2,000 birthday messages ahead of her special day.   

She is Ireland’s longest-surviving person with recessive dystrophic epidermolysis bullosa (EB), the most severe type of the excruciatingly painful condition known as butterfly skin. The normal life expectancy is 30-35 years.

With characteristic spirit, Emma said: “I fought to go to college, I fought to live independently, I fought to learn to drive, I fought cancer twice, I fought to get to 40 and I’m still fighting.” 

A birthday message from one well-wisher, one of over 2,000 to be compiled in a book, said: ‘You are a powerhouse, an inspiration in how you push through to raise awareness, despite a huge cost to your own health.’ 

When Emma was born in June 1984, her parents Patricia and Malachy were told that she would not survive beyond a week and that she would be better off, as EB is such a cruel condition. She has not only disproved all predictions but has also overcome cancer twice.

However, her remarkable valour comes at a severe cost. Eighty per cent of her body is covered in bandages to prevent wound infection and changing them takes four harrowing hours every second day.

For her 40th birthday year, Emma took part in the Irish Life Dublin Marathon last October alongside her faithful friend Colin, who ran the entire event and pushed her for the final 4km.

Emma said: “Some moments stay with you forever and crossing the finish line at the Dublin Marathon is one of them. I feel happy whenever I think about it. It's a great memory to have.” 

The two friends originally hoped they would raise €400,000 for Debra, the national charity that helps people living with EB, during the ‘Emma’s Run to 40’ campaign. Instead, they collected almost €1million, after a memorable appearance on the Late Late Show.

Funds raised during the campaign are being used for pioneering research and bespoke support for the 300 people battling EB in Ireland but it took an enormous toll on Emma’s health.

She said: “Pain is just part of life with EB. It’s always there. I’m always in agony. And just as I predicted on the Late Late Show, that 4km took a massive toll on me. It took even longer than expected for me to recover.” 

Just after Christmas, Emma got a painful lump and an infection in a wound on her right elbow, prompting fears that she was about to face her third bout with cancer.

She recalled: “Thankfully, the biopsy was clear. The lump was benign but it took a lot of medication and a long hospital stay to deal with the infection. I’m delighted to be back home now, a bit drained but so happy to be well.

“Whatever happens in life - whether it be bad news, hospital visits, or needing a new wheelchair - I’ve always felt safe and acknowledged knowing Debra is here.

“Debra gets only a very small amount of government funding. This means 99% of all the money they raise to fund research, support and care comes from amazing people who donate.” 

Donations can be made at debra.ie/emma-donate