Bucket list: Terminally ill Karl says he ‘isn’t ready to go’

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Karl ButlerImage copyright
Max Clark

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Karl Butler said his main ambition was to watch Manchester United play at home

A man who has been told he has just months to live has made a bucket list to help “keep positive”.

Karl Butler, from Ipswich, was born with complex heart problems but was told by doctors weeks ago he would only receive palliative care in future.

He has just been given an award by NHS England for his “tireless efforts” helping others.

Mr Butler, 38, said: “I’m not ready to go as there are still things to be done.”

His list includes watching Manchester United, riding in a “hippy-style” van and going to Italy.

The NHS worker, who has mild learning disabilities, said he was not initially expected to live beyond six months of age and spent his childhood having operations.

Image copyright
Angelle Joseph

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Mr Butler helped set up the Pick and Mix club night in Ipswich for people with learning disabilities and mental health problems

Eight years ago, he was told his condition would worsen but he only started planning his bucket list in October after he collapsed.

During a recent hospital stay, doctors said he was not expected to live another year.

“The lesson learned is not to take anything for granted,” Mr Butler said.

“I understand a lot of people don’t like to talk about health issues, but I am because I’ve lived through it my whole life.

“You don’t have to keep it to yourself, there are plenty of people to help you if you want to talk.”

Mr Butler, who is single and was brought up in a foster family who remain supportive, now tires easily and has to carry a portable oxygen tank.

He said he hoped to achieve his last wishes with the help of his friends, including going to Italy, Disneyland Paris, Latitude Festival, and a West End musical, but top of his list is watching Manchester United.

“It’s mainly about the experience to see a big game and feel part of the crowd,” he said.

He said he also dreamed of riding in an Aston Martin, Ferrari or even a hippy-style camper van, which “sounds stupid, but would be fun”.

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Karl Butler

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Mr Butler (right) with a friend when Ipswich Town played Manchester United

Mr Butler said his biggest ambition in life had been to get a job “while I was well so I didn’t think about the bucket list”.

He was appointed a part-time learning disabilities advisor for NHS England two years ago, and has recently been given an award by NHS England for his “tireless efforts” improving the lives of others with learning disabilities, and putting those with “lived experience at the forefront of NHS policy”.

He said he was still managing to work to help “afford” his ambitions.

“Some people might sulk but that’s not good for your mind and whatever you do has an impact on your family,” Mr Butler said.

“I don’t want people to feel sorry for me – I’ve always set out to make a difference and change other people’s lives, and that’s what motivates me to stay positive.”

Image copyright
Tara Fajaysian

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Mr Butler has just been given an award for his “tireless efforts” by the head of NHS England, Simon Stevens

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