Waterford resident supports fundraising cycle for infant with rare condition
Caused by a lack of protein between the skin’s layers, EB causes extremely painful blisters
A Waterford resident joined a devoted uncle, who cycled 300km for the 300 people in Ireland who live with the painful genetic skin condition, epidermolysis bullosa.
Tayyab Syed, who is based in Waterford city, joined his EY Ireland colleague Gary O’Callaghan for the last leg of the trek, cycling the 135km stretch from Waterford to Cork.
Gary, who is 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.
“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.
“The support my colleagues, like Tayyab, 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.”
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 money raised from Gary and his EY Ireland colleagues’ cycling fundraising efforts will go towards Debra, the national charity helping 300 people in Ireland living with it.
“The bandage changes are very difficult and I 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.”
While Sienna’s parents are both NHS healthcare workers in London, Gary says 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 on August 29.
A team of 17 colleagues from EY Ireland offices across the island of Ireland got behind the cause - click here to support the fundraiser.