Sean Cregan died in a hospital in Stuttgart, Germany in the early hours of Friday morning following more than two years of him desperately seeking medical help.
The Edinburgh-born photographer was believed to have had a cerebrospinal fluid (CSF) leak, a condition in which the watery liquid surrounding the brain spills out meaning the cushioning effect is reduced and his brain slumps.
This results in the 39-year-old suffering from a number of effects including blacking out and fainting when sitting up or standing as the circulation cut off to his brain.
After months of being bed ridden in different UK hospitals and his quality of life deteriorating he decided to fly to Stuttgart as a last resort to get the care he needed.
His devoted mother Rose, who lives in Clermiston, told the Evening News of her heartbreak and the last time she spoke of her son.
The emotional 72-year-old said: “Sean phoned me at 8pm on Wednesday saying he’ll call me in an hour. I hadn’t heard anything and presumed he’d fallen asleep. I then got a phone call from the hospital at 2am on Thursday saying he had been found dead in his hospital bed.
“I’d only seen him last month. He was bloated from all the steroids and his stomach was black and blue. He couldn’t lift his head and couldn’t go to the toilet.
“I just couldn’t believe it. My head is all over the place and I can’t believe he is gone.”
Sean returned to the UK in the hope of receiving treatment on the NHS after spending all his life savings on care in China.
He previously had medical appointments at the Western General but it was in July last year when he collapsed at a hotel and was admitted to hospital where he spent three months in a bed.
The University Hospitals Birmingham NHS Foundation Trust billed him £18,000 for treatment after it was unable to verify a number of documents provided by Sean, including his British passport - something that was disputed by the photographer.
Despite being unable to sit up straight without fainting, he was deemed medically fit to be discharged earlier this month by doctors. Doctors have identified a blood clot in his left leg while he also developed acute renal failure.
With no friends or relatives in Birmingham, Sean decided to be transported to a hotel in Cambridge so he could be close to a neuroradiologist who told him he could perform the procedure he needs.
But less than 48 hours later he was rushed into A&E when a hotel cleaner found him sprawled out on the floor of his room after collapsing while trying to get to the toilet.
Sean was delighted when he was told he would be getting a procedure involving getting a stent and balloon inserted under a jugular vein to stop it from narrowing and blocking off his blood supply.
But weeks later it is believed a U-turn was made and doctors discharged him, leaving him to fly out to Stuttgart.
Rose has slammed the NHS for its inability to address her son’s condition claiming he was neglected by health experts. A letter in his medical notes read experts felt he had ‘fabricated illness type syndrome’.
As well as grieving the loss of her boy, Rose has been left in turmoil with no idea of how she is going to bring his body back to Scotland.
She added: “He kept on getting discharged saying nothing was wrong because experts were not listening to him and neglected him. There was no need for him to get to this point.
“He didn’t want to be in hospital. He wanted to get better.
“Sean was very intelligent and lived for photography. He was desperate to get back doing what he loved.
“I’ve spent all my money trying to help him as best as I could. Now I’ve got no money left and I can’t afford to bring him home where he belongs.
“I’m on my own and it’s breaking my heart.
“I wouldn’t want anyone else having to go through what Sean has had to over the past few years. He didn’t deserve the treatment he received at all.”
• An online fundraiser has been set up so that Sean can be flown back from Germany. It can be accessed here.