Cancer survivor trains for mountain trek in aid of ‘butterfly skin’ charity

By Gráinne Ní Aodha, PA

A cancer survivor is training for a Kerry mountain trek to raise funds for people living with an incurable skin condition – a year after having a large tumour removed from his bowel.

Mark Leaney, a long-distance runner and former footballer, also had to be rushed to hospital when he reacted badly to treatment.

The Sussex-native, who lives near Camolin in Wexford with his wife Pauline, got the all clear late last year, and is now preparing for a charity hike in aid of people with epidermolysis bullosa (EB).

“The consultant told me that they feared they were going to lose me,” the father-of-two said.

“If it hadn’t been for Pauline’s insistence on rushing me back to A&E, that would have been the case.”

The 59-year-old is to join 120 fellow fundraisers hiking distances of up to 19km a day for three days across mountains paths, forest trails and beaches along the Dingle Peninsula.

The money raised will go to EB charity Debra Ireland, which helps around 300 people in Ireland living with the painful and incurable disease which causes skin to blister at the slightest touch.

This will be Mr Leaney’s 10th time taking part in the charity’s annual Kerry Challenge, which takes place from May 19 to 21 this year, but he will walk the course for the first time.

He took up long-distance running after retiring from football but needs to build up his fitness again after undergoing months of chemotherapy and radiotherapy.

“In March 2021, I was told there was a very aggressive tumour growing in my bowel,” he said.

“But it was too large for them to remove and I had to undergo a combined course of radiotherapy and chemo to reduce its size before they could operate.”

EB (epidermolysis bullosa) is a rare, genetic skin blistering condition. Babies born with EB have skin that can blister at the slightest touch.

Currently there is no treatment or cure.

Please RT to shine a light on EB and the 6,000 rare diseases worldwide #RareDiseaseDay2023 pic.twitter.com/YuA4LqeTsU

— DEBRA Ireland - The Butterfly Skin Charity (@debraireland) February 28, 2023

Part of his treatment involved energy-sapping chemo drugs being pumped directly into his chest.

“I went through the mill, losing over four stone in weight,” he said.

“I was so exhausted I couldn’t walk up the stairs.

“My consultant said the intensity of the treatment I was going through was in the top 3% for this type of illness.”

He had an operation in May 2022 to remove his tumour, but insists his two-year battle with cancer has been a “walk in the park” compared to the pain experienced by people living with EB.

“Pain should only be temporary, but for EB sufferers that’s not the case,” he said.

“They live with pain every day, and the discomfort I experienced over the last two years pales into insignificance when you consider what they go through every day.”