Dubliner’s coast-to-coast cycle in memory of teen brother

A Dubliner is to take on a mammoth east-west cycle in memory of his brother, who died at 16 from a rare skin condition.

Kalebh Fynes, 29, will pedal over 230km from Portmarnock to Salthill in Galway over the May bank holiday weekend in tribute to his brother Aaron, who was born with epidermolysis bullosa (EB).

Also known as ‘Butterfly Skin’, the genetic condition is caused by the absence of proteins which bind the skin layers together and can make it tear or blister at the slightest touch.

Kalebh’s challenge, which will raise funds for Debra, the national charity supporting those with EB in Ireland, comes less than a year after he climbed Africa’s highest peak, Kilimanjaro, for the same cause.

“We’ll begin on Friday (May 3) and will cycle to Athlone, where we’ll camp overnight, and then we’ll cycle the remaining distance to Galway on Saturday,” said Kalebh, from Ballyboughal, North Dublin.

“At the moment, ten of us have signed up to do it but all are welcome to join, whether you’re an experienced cyclist or just up for the challenge.”

Kalebh was just six when Aaron died as a result of EB in 2001 – but feels his presence still.

“I missed out on getting to know Aaron on a mature level but feel now, through Debra and events such as this, that I can connect with him,” he said.

“I still look up to him and he still influences my life and the lives of others around me.”

His father Val will drive a support van alongside the team, transporting the bikes back to Dublin, while his brother, Isaiah, will also trail the group in a car filled with refreshments and first-aid.

The rest of the family, including mum Maria, will be waiting in Galway to cheer the group on during their final stretch.

Kalebh saw the effects of EB first-hand through his brother’s experience, as severe cases, like Aaron’s, can require three-to-four-hour bandage changes daily to treat painful blisters.

This inspired him to scale Kilimanjaro last August and he hopes to continue raising awareness about the condition.

“Debra’s care and personnel, and the families affected by EB that need assistance, are spread thin,” said the engineer.

“There are two reasons why I do these fundraisers, the first is in memory of Aaron and secondly, to raise awareness and funds for Debra.

“I also want to be able to reflect on every year when I’m old and grey with a marker of something that I have done.

“It’s a way to remember each year and what better reason than in memory of Aaron? I’d also like to thank everyone who supports me and helps me raise funds each year.”

To join in the cycle, contact Kalebh directly on 085 2069329.

With a €5,000 target, donations to his fundraising page can be made here: https://www.justgiving.com/page/dublin-to-galway-and-ireland-to-england-row-2024-debra-ireland

For more information on EB, visit debra.ie