Campaigner for cystic fibrosis sufferers who brought sunshine to lives of many

Billy Burke: Billy Burke, the cystic fibrosis victim and campaigner who died this week at the age of 29, without the chance …

Billy Burke: known to his closest friends as 'Sunshine', he became a household name as a campaigner for fellow cystic fibrosis sufferers.
Billy Burke: known to his closest friends as 'Sunshine', he became a household name as a campaigner for fellow cystic fibrosis sufferers.

Billy Burke: Billy Burke, the cystic fibrosis victim and campaigner who died this week at the age of 29, without the chance to live longer which he felt a double lung-transplant might have given him, was known to his closest friends as "Sunshine".

At his funeral Mass on Thursday, the chief celebrant, and parish priest of Killorglin, Father Michael Fleming, elicited quiet smiles when he remarked Billy was a man "who brought sunshine" into the lives of many people, since becoming a household name as a campaigner for himself and fellow cystic fibrosis sufferers.

Born into a Killorglin business family where his father Liam ran a butcher shop and his mother Mary was a bank official, he quickly won the hearts of the town.

He was diagnosed early with cystic fibrosis, but refused to allow it to get in his way.

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As family members recalled this week, he was "no saint". He was a "pure devil" - which in the peculiar Kerry meaning of the expression is reserved for a person much loved, full of trickery and fun, but wholly without malice. At his funeral, his older sister Lisa spoke of his "devilish and infectious laugh".

This early reputation for fun was to remain with him. Anecdotes recounted this week touched on a brief escape from a hospital ward, arranged by friends to celebrate his 21st birthday, ostensibly to a cinema but in reality to a public house; on the showers of rain on cloudless days which descended on customers emerging from Nick's Restaurant in Killorglin across from the family butcher shop; and on a cough at the Irish Open in Killarney in 1992 which could have put winner Nick Faldo off his putt.

This energy of spirit led him, though much weakened physically, to give a thumbs up as a thank you to the Garda escort which accompanied him to the Mater Hospital in Dublin for what was to be his final journey days before his death.

He had a keen mind, a grasp of numbers, and high finance, and kept up with the latest technology. After the Intermediate School in Killorglin, he attended the Tralee Institute of Technology, and then the University of Limerick where he graduated in 1996 with a business degree.

He worked first with Grant Thornton in Limerick, then with Fexco in Killorglin and Malta. A yearning to travel further saw him live in Australia for a period. He was a frequent visitor to the former Soviet Republic of Georgia, where his friend Mr Nika Gilauri, who he met at the University of Limerick, was this year appointed fuel and energy minister.

He had a fascination with cars and computers and was looking at a brochure for new laptops with the intention of buying one, the day before he died.

He became during the final four years of his life, when his condition increasingly worsened, the voice and the face of the Cystic Fibrosis Association in Ireland.

His logical, clear mind, honed in the world of business and finance, could not grasp how bureaucracy in Government and in the Department of Health's arrangement with UK hospitals could tie up what were to him, obvious solutions. As he told reporters last April: "No-one seems to be willing to stand up and take responsibility."

He was baffled too by the conflicting opinions handed to him by two English hospitals on whom he had to depend in the absence of transplant facilities here.

Late last year he was taken off the transplant waiting list in the Freeman Hospital Newcastle on medical grounds. The Newcastle hospital has first call on Irish lungs by arrangement with the Department of Health. He sought a second opinion from specialists at Wythenshawe Hospital in Manchester. They deemed him suitable for a transplant and placed him on their lung transplant waiting list. However, he felt that since the Newcastle hospital would not release lungs from an Irish donor for him, he had little hope of a transplant. His condition was deteriorating rapidly.

Some 55,000 people signed petitions on his behalf and 5,000 gathered at an emotional rally in his home town last April.

He was not afraid to die, he recognised fully the dangers inherent in a transplant operation, he said, but he did not want to die without the chance to live. He was always quick to acknowledge the strain his close family were under and the affection they bore him, and he was particularly close to his mother, Mary, who cared for him 24 hours a day as his condition worsened.

He is survived by his mother, Mary, his father Liam, his sisters Lisa and Regina, brother-in-law John Joyce, nephew Jack and niece and godchild Emma.

Billy Burke: born February 22nd, 1975; died November 23rd, 2004.