A devoted uncle has cycled 300km for the 300 people in Ireland who live with the painful genetic skin condition, epidermolysis bullosa (EB).
Gary O’Callaghan, a Director in Business Consulting at EY Ireland, was inspired to undertake the impressive feat when his niece, Sienna, was born with EB simplex 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 was no cure,” said the Dubliner, based in Merrion Square.
“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 hospital.”
Sienna 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 highlighted to Gary the urgent need to raise awareness around EB.
To date, he and his EY Ireland colleagues’ cycling fundraising efforts have raised over €16,000 for Debra, the national charity helping 300 people in Ireland living with it.
“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.”
Gary (pictured above) highlighted that, while Sienna’s parents are both NHS healthcare workers in London, many families are thrust into the position of carer with little experience.
“It’s about making sure that 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.”
The Dubliner also found great comfort through his working community at EY Ireland, who supported him in trying to turn a difficult time into something positive.
They planned the fundraising cycle route by connecting the EY offices of Dublin, Waterford and Cork, setting out last Thursday. (Aug29)
A team of 17 colleagues from EY Ireland offices across the island of Ireland got behind the cause.
They covered 165km from Dublin to Waterford on the first day and the remaining 135km from Waterford to Cork on the second but their commitment to the cause began with serious training almost two months prior.
“The support my colleagues have shown me is overwhelming, from the dedication they put into training each weekend, as well as the more than €16,000 we’ve raised to date,” said Gary.
“This will go towards providing care to the 300 people living with EB here in Ireland.”
To support Gary’s cause throughout the month of September, visit: https://www.idonate.ie/event/cycledublintocork.