‘He defied the odds’ – Sister’s heartbreak after ‘cheeky and passionate’ Karl dies suddenly
PUBLISHED: 16:30 30 July 2020
A music-loving Ipswich man, who doctors thought wouldn’t live past six months old, has died at the age of 39 after his heart suddenly stopped beating.
Karl Butler, who was born with a complex heart condition and underwent a number of major surgeries, died on Wednesday, June 24 after he had been shielding from coronavirus in his Ipswich flat and hadn’t seen his close friends or family in months.
The 39-year-old, who had mild disabilities, worked as a disability advisor for the NHS, which his older sister Zena Butler said he “was very passionate about”.
Zena, 47, who wasn’t just Karl’s sister but also one of his closest friends, said: “I am so proud of him and everything he achieved.
“He loved his job, he was very passionate and he thought that not enough was being done for people with learning difficulties.
“He was very cheeky, always having a laugh with a smile on his face, and he wasn’t afraid of pushing the boundaries – in a good way.”
Karl, who was fostered at the age of six, started a bucket list last summer after being told that he was at the end stage of heart failure and would only receive palliative care in the future.
He was told by doctors to “expect the worst” and has since completed some of his biggest dreams – partying hard at Latitude festival, watching England play Bulgaria in a VIP box at Wembley Stadium and having strawberries and cream at Wimbledon.
MORE: Terminally ill Ipswich man told ‘to expect the worst’ starts epic bucket list
He even starred as a DJ at Revolution in Ipswich last summer, playing some of his favourite music to partygoers.
“For someone so little, he achieved so big,” said Zena, who has found comfort in the kind tributes being paid to Karl all over social media following his tragic death.
She said Karl’s passing has come as a shock to the family, who had made plans for his palliative care and were hopeful he had more time left.
Karl, who had been shielding alone since March and was “missing the human comfort”, was so desperately excited for July 6, when he would have been allowed to go out and see his friends and family for the first time.
“It was very sudden,” said Zena. “None of us were prepared so we are just trying to take each day as it comes, remembering the good times and memories of Karl.
“But I have found it difficult not to get upset about it.”
Over the years Karl has been awarded for his incredible work with the NHS and for becoming a voice for those with disabilities.
He received the Matthew Percy award from IO radio at their annual awards for his volunteering work and was celebrated by NHS England for his “tireless efforts”.
Zena said: “Karl has always defied the odds, he was very ambitious and he had really grown in confidence thanks to the great support system of friends he had around him.
“He was small in stature, but he had a huge personality.”
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