Engineer Kalebh Fynes who scaled one of the world’s tallest mountains in memory of his brother now hopes to row the Irish Sea to raise awareness about the rare disease he died from.
When Dubliner Kalebh Fynes reached the peak of Mount Kilimanjaro in Tanzania, east Africa, his first thoughts were for his sibling Aaron, who was just 16 when he passed away.
Aaron, who was born with no skin on his right leg or right ankle, was later diagnosed with epidermolysis bullosa (EB), also known as Butterfly Skin a genetic condition that makes the skin tear or blister at the slightest touch.
Although Kalebh, 28, was only six when he died in 2001, he has vivid memories of his brother.
“Everyone loved Aaron,” Kalebh, from Ballyboughal, said. “He had such a special presence and would light up every room. Whenever we visited our local football club in Killester, everyone would stop to greet Aaron.”
Speaking on his return from Africa, Kalebh revealed that the highest he had climbed before taking on the 5,900m trek to Kilimanjaro’s summit for national charity Debra, was 1,000m while hill walking.
“I had never hiked for two days in a row before, and when I reached the top of Kilimanjaro, one of the guides said to me, ‘your brother would be so proud of you’.
“That for me was the highlight of the trip, and as we prepared for the descent, I was able to reflect more on my reasons for the climb.,” he explains. “Reaching the peak of a mountain like this is both a physical and mental challenge and for me, it really put it into perspective the challenges that children with EB face daily.”
EB is a genetic illness caused by the absence of proteins which bind the skin together.
In the most severe cases, like Aaron’s, three-to-four-hour bandage changes are required daily to treat painful blisters. In some cases, the blisters can become infected.
Kalebh said he recalls helping his mother change Aaron’s dressings. “I can remember him being in pain a lot and not really understanding why,” he added.
Kalebh, who works for a micro-chip manufacturer, climbed Kilimanjaro in August in aid of Debra – the national charity which supports around 300 people living with EB in Ireland. So far, he has raised €3,235.
He now hopes to cycle from Dublin to Galway and back and row across the Irish Sea to raise more funds for the charity which his parents, Maria and Val Fynes, helped to establish.
“My friends think I’m a bit crazy, but if something like rowing to England helps to raise awareness for Debra, then it’s a challenge worth taking on.”