Gary O’Callaghan was inspired to undertake the impressive feat when his niece, Sienna, was born with EB in April of this year.
“My sister gave birth to this beautiful baby girl, and, although EB was something I was slightly aware of, I only then learned that there is no cure,” he said.
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“Having that outside-in perspective of seeing my sister, Sarah, and her husband, Sahil, really struck a chord with me after she came back from the hospital.”
Mr O’Callaghan and a team of 17 colleagues from EY Ireland got behind the cause and trained well in advance of their lengthy journey.
The team cycled 165km from Dublin to Waterford on the first day, and the following day covered another 135km from Waterford to Cork.
Mr O’Callaghan’s niece was born with no skin on her arms from her shoulders down, and on her legs from her thighs down.
Caused by a lack of protein between the skin’s layers, EB causes extremely painful blisters, and Sienna needs daily bandage changes to prevent infection.
The nurses did not immediately identify the condition at birth, which gave Mr O’Callaghan even more motivation to raise awareness around EB.
To date, he and his EY Ireland colleagues’ efforts have raised over €16,000 for Debra, the national charity helping 300 people in Ireland living with EB.
“I found the bandage changes very difficult and wanted to do something to help,” he said.
“Given that there are only 300 people in Ireland and 5,000 people in the UK with it, it isn’t surprising that not that many people are aware of EB.
“Setting out to do 300km for those 300 Irish people was all about raising awareness and vital funds for this condition.”
Mr O’Callaghan added that while his sister and her partner are both healthcare workers in London, many other families are put into the position of being carers for their loved ones with EB with little to no experience.
“It’s about making sure the child grows up seeing the parent as a parent and not as a carer,” he said.
“We’re a close family, and we’re all in this together to make Sienna feel as loved as possible.”
