Aaron was later diagnosed with EB. Although Kalebh was only six when Aaron died aged 16 as a result of EB in 2001, he has vivid memories of his brother.

“Everyone loved Aaron,” said Kalebh. “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. 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.”

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. “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.”