‘Critically ill with one of the world’s rarest diseases in a remote corner of British Isles’
Paddling in a bay on the tiny Channel Island of Sark, I suddenly felt very sick and cold.
Less than 48 hours later, I was being emergency evacuated to the intensive care unit of a London hospital via cart, tractor, lifeboat, private jet and ambulance.
Ultimately, an incredible team of doctors, nurses, and volunteers saved my life – for a second time, though falling ill with one of the rarest diseases in the world while in one of the remotest corners of the British Isles was an unfortunate first.
Deborah Haynes covers some of the biggest foreign stories around the world. She also hosts The Wargame podcast
I have something called atypical Haemolytic Uremic Syndrome (aHUS) that – when triggered – affects my immune system, destroying blood cells and harming other vital bodily functions.
Classed as “ultra-rare”, there is only around one new incident of aHUS per two million people every year. And an attack can be fatal, so the speed of diagnosis is key.
In my case, I already knew about the condition as I first fell ill with it eight years ago.
When it happened a second time, the heroic efforts of Sark’s only doctor, a group of volunteer rescuers and the medics at University College Hospital (UCH) meant I was raced from the middle of the English Channel to an intensive care bed in just over 11 hours – enabling rapid and effective treatment.
Now back home and expected to make a full recovery, I thought I would share my experience to help raise awareness about this little-known disease as today is aHUS Awareness Day.
Deborah Haynes in ICU after falling ill with atypical Haemolytic Uremic Syndrome (aHUS)
‘I was feeling increasingly wretched’
My husband and I had planned to spend a few days in August on Sark – a beautiful island in between the UK and France that is a designated “dark sky” area because of an absence of light pollution.
There are no public streetlights on the territory.
More relevant to this story, cars and regular ambulances are also banned.
Instead of driving, Sark’s just over 500 residents and ferry-loads of tourists either walk, cycle or sit on the back of carts towed by horses – and on occasion tractors – to visit beaches, coves and other attractions.
A some 100-metre-high ridge connects the rock islands on Sark. File pic: AP
I started to feel queasy on the ferry that took us to Sark.
We initially thought it was seasickness.
But the nausea lingered as we walked from the port to our hotel to dump our bags.
Thinking a swim might make me feel better, we trekked down a steep path to the beach and ventured into the sea, which is when my body decided to break.
I came out of the water, shivering uncontrollably and thought I was going to faint. After getting myself dry, we tried to return to the hotel, but I started vomiting violently on the side of the path – much to the disgust of a family that was trying to overtake us.
Once back at the hotel, I collapsed into bed, only leaving it to be sick.
We speculated that it must be food poisoning and hoped it would pass within a day.
But 24 hours later, while I had stopped vomiting, I was feeling increasingly wretched and beginning to wonder whether it could be aHUS again.
The ‘ultra-rare’ condition is caused by part of the immune system becoming overactive
‘The onslaught is like an invisible storm’
The only other time I have been struck down by the disease was in January 2017, while working as the defence editor at The Times.
On that occasion, I took myself to my local hospital in Kent to be told that I had acute kidney failure and my bloods were “deranged”.
Fortunately, the haematologist on duty had been aware of aHUS – then a new acronym for me – and had me rushed to University College Hospital in London, which has a specialist team that can treat the condition led by Professor Marie Scully, a world-renowned expert.
I soon learnt that aHUS is caused by part of my immune system – called the complement system – becoming overactive and attacking my body rather than targeting bugs.
This “friendly fire” – likely linked to a genetic glitch that, in my case, had thankfully lain dormant for the first 40 years of my life – can be activated by infection, pregnancy or food poisoning, though sometimes the cause is unknown.
The subsequent onslaught is like an invisible storm that destroys a patient from the inside, shattering red blood cells, damaging small blood vessels and causing tiny clots.
The clots clog up kidneys and trigger acute renal failure.
If left untreated, other organs can also collapse, while the risk of a stroke or heart attack rises.
Without intervention, the prognosis is dire.
Between 10 to 15% of patients die during the initial illness, while up to 70% of patients develop end-stage renal failure, requiring a lifetime of dialysis.
Since 2013, however, patients in the UK have had access to a drug called eculizumab, which effectively turns off the malfunctioning part of the immune system. It is expensive – at many thousands of pounds a shot – but it saves lives, including mine.
An aHUS attack can be fatal, so the speed of diagnosis is key
‘My protein levels were off the scale’
Lying in bed in Sark more than eight years on from the first episode, I did not want to believe my body had turned on itself again.
But after a little over 36 hours, with no improvement, my husband decided to get help.
His action likely saved me from even graver kidney damage or worse.
He set out to find Sark’s only GP, Dr Bruce Jenkins.
Blood tests are the best way to diagnose aHUS, but they were not an option on the island.
Instead, Dr Jenkins did a urine test, which is a good alternative.
Any trace of blood or protein in the urine is a sign that a person’s kidneys are in trouble.
My protein levels were off the scale of the test.
Upon seeing the result, Dr Jenkins instructed my husband to go back to our hotel and pack our bags – I was still floundering in bed – while he coordinated an emergency evacuation.
On Sark, given the lack of vehicles, this meant mobilising an ambulance cart towed by a tractor, which is operated by a team of Community First Responders – all volunteers.
The Sark medical team who helped save Deborah’s life
The GP also contacted the main hospital on Guernsey, a larger Channel Island, which provides a marine ambulance service to rescue anyone with a medical emergency on Sark.
While all this was happening, I called an emergency number for the aHUS medics at University College Hospital to warn them I was likely suffering a relapse.
By chance, Professor Scully was on duty that day – a Friday – and over the weekend. She and her team sprang into action, contacting Sark and Guernsey to help.
Speed was key as my condition was worsening.
‘I asked a doctor if I was going to die’
Within minutes of the alert going out from Dr Jenkins, a tractor, pulling a white ambulance cart, arrived at our hotel, and the first responders guided me and my husband onboard.
They took us to the port to wait for the “Flying Christine”, an ambulance boat carrying two paramedics and operated by St John’s Ambulance and Rescue Service.
That team transported us via sea to Guernsey hospital before we were transferred to a specialist medical plane to be flown to Luton airport.
The last leg was a more conventional ambulance drive to UCH, where critical care doctors, as well as Professor Scully and her colleagues, were poised to start the treatment.
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This quick response by the NHS and a network of volunteers meant I was taken from my sickbed in Sark to life-saving treatment in London in barely 11 hours.
By this point, the aHUS attack had caused my haemoglobin and platelet levels to drop, and my kidneys were failing.
The main treatment was the eculizumab drug – administered intravenously – but I also needed blood transfusions and to be put on a machine that acts as a form of dialysis.
The relief of being in the best possible place for my condition was immense, but the next few days were still frightening as my body took time to respond.
At one point, I asked a doctor if I was going to die – she assured me I was not.
Deborah has now been discharged and says she is ‘on the mend’
On another occasion, pumped full of medication, hooked up to various machines and drifting in and out of sleep, I dreamt I was under missile fire – an occupational hazard of being a journalist who covers war – and tried to leap out of bed to an imaginary shelter, prompting the nurse who was looking after me to spring into action and make sure I stayed put.
Gradually, though, the treatment started to work.
After nearly a fortnight in hospital, including one week in intensive care, I was well enough to be discharged.
Today, I am on the mend and incredibly grateful to everyone who helped to save me from myself.
Deborah Haynes and Professor Marie Scully will be on Sky News from 8.30am to speak about aHUS Awareness Day.
UK
Manhunt for Epping hotel asylum seeker, jailed for sexually assaulting girl, after accidental release
A manhunt has been launched for an accidentally released asylum seeker who was jailed for 12 months earlier this year after he sexually assaulted a 14-year-old girl and a woman in Epping.
Hadush Gerberslasie Kebatu had been staying at The Bell Hotel in the Essex town, with the incident fuelling weeks of protests at the site.
The Ethiopian national was found guilty of two counts of sexual assault, attempted sexual assault, inciting a girl to engage in sexual activity and harassment without violence earlier this month.
District judge Christopher Williams said Kebatu posed a “significant risk of reoffending” when he sentenced him to 12 months in prison in September.
Sky News understands Hadush Kebatu was being released from HMP Chelmsford as he was due to be immediately deported.
Hadush Gerberslasie Kebatu was jailed for two sexual assaults in Epping. Pic: Essex Police / PA
He was released on the expectation that he would be picked up by immigration enforcement, but it is currently unclear what happened next. It is understood that the Home Office was ready to take Kebatu to an immigration removal centre.
Sky sources say the search for Kebatu is within Essex, which launched a manhunt after he was accidentally freed on Friday morning.
Kebatu’s lawyer, Molly Dyas, told Chelmsford Magistrates’ Court during his trial that it was his “firm wish” to be deported.
Under the UK Borders Act 2007, a deportation order must be made where a foreign national has been convicted of an offence and received a custodial sentence of at least 12 months.
Kebatu was accidentally released from HMP Chelmsford. Pic: iStock
Deputy Prime Minister David Lammy is said to be furious and has ordered an investigation and is supporting police efforts, according to a Government source.
Mr Lammy said in a post on X that he is “appalled at the release in error”, adding: “Kebatu must be deported for his crimes, not on our streets.”
Reform UK leader Nigel Farage said: “The Epping hotel migrant sex attacker has been accidentally freed rather than deported. He is now walking the streets of Essex. Britain is broken.”
Tory leader Kemi Badenoch said Kebatu was released as a result of “the entire system collapsing under Labour”.
Chelmsford MP Marie Goldman said in a statement following the accidental release: “The police must do everything they can to ensure that this man is returned to custody immediately so that he is deported at once.
“Once the manhunt is over, there must be a full, rapid public inquiry into how this happened. This is utterly unacceptable and has potentially put my constituents in danger. I expect answers from the Prison Service.”
Hadush Gerberslasie Kebatu, left, in a court sketch. Pic: Elizabeth Cook/PA
The Prison Service said in a statement that it was “urgently working with police to return an offender to custody following a release in error at HMP Chelmsford”.
“Public protection is our top priority and we have launched an investigation into this incident,” a spokesperson added.
It is understood that releases in error are incredibly rare and are taken extremely seriously by the Prison Service.
But policing and crime commentator Danny Shadow says that releases in error are actually not uncommon.
“Last year, there were 87 prisoners who were released in error. So that’s around six or so every single month. Seventy were released from error from prisons and another 17 from the courts,” the former Labour home affairs advisor told Sky News.
An officer has been removed from duties to discharge prisoners while the investigation is ongoing.
Kebatu was staying at the Bell Hotel in Epping. Pic: PA
During his trial, the court heard that Kebatu had tried to kiss the teenager, put his hand on her thigh and brushed her hair after she offered him pizza.
The asylum seeker also told the girl and her friend he wanted to have a baby with them and invited them back to the hotel.
The incident happened on 7 July, about a week after he arrived in the UK on a boat.
The girl later told police she “froze” and got “really creeped out”, telling him: “No, I’m 14.”
The Bell Hotel has been the site of protests over the summer. Pic: AP
Kebatu was also found guilty of sexually assaulting a woman – putting his hand on her thigh and trying to kiss her – when she tried to intervene after seeing him talking to the girl again the following day.
The incidents sparked anti-migrant protests and counter-protests outside the former Bell Hotel in Epping – as well as at hotels housing asylum seekers across the country.
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An asylum seeker has been found guilty of murdering a hotel worker at a train station in the West Midlands.
Deng Chol Majek was caught on CCTV following Rhiannon Skye Whyte from the Park Inn hotel, in Walsall, where he lived and she worked, to the nearby Bescot Stadium station.
She was stabbed in the head with a screwdriver 19 times, and 23 times in total, on 20 October last year.
Deng Chol Majek. Pic: PA
Mr Majek, who is from Sudan and claims to be 19 years old, had told Wolverhampton Crown Court he was at the hotel for asylum seekers at the time the 27-year-old was attacked.
A two-week trial heard that Mr Majek had previously been reported to security at the hotel after “spookily” staring at three female staff members for prolonged periods.
Ms Skye died in hospital three days after the attack, having been found injured in a shelter on the platform by the driver and guard of a train which pulled in about five minutes later.
Rhiannon Skye Whyte. Pic: Family handout/PA
Mr Majek, who is about ten inches taller than Ms Whyte, walked to the Caldmore Green area of Walsall after the attack to buy beer, and was recorded on CCTV apparently wiping blood from his trousers.
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He returned to the hotel at 12.13am, changed his bloodstained flip-flops for trainers, and was seen dancing with other residents in the car park, within sight of emergency vehicles called to the station.
Asked by defence KC Gurdeep Garcha if he was at the train station when Ms Whyte was stabbed, Mr Majek replied: “No.”
He also denied being “responsible for that fatal assault” on the platform.
CCTV from the reception area of the hotel alleged to show Deng Chol Majek staring at Rhiannon Whyte, left. Pic: PA
Prosecutor Michelle Heeley KC said of Mr Majek’s behaviour after the murder: “He is celebrating, his mood has changed from that prolonged scowl before the murder to dancing and joy after the murder. It is utterly callous.”
Mr Majek said he had spent time in Libya, Italy and Germany before arriving in the UK to claim asylum in July last year.
He will be sentenced at a later date.
‘She was always happy’
Rhiannon’s sister, Alex Whyte, said her sibling “always wanted to make everyone else around her happy”.
She said: “Rhiannon had such a quirky personality. You would hear her before you’d see her.
“No matter what her day had been, she always wanted to make everyone else around her happy. She always prioritised family. That was the most important thing to Rhiannon. Obviously, she has a brother and three sisters. And my mum, who was her best friend.”
She added: “Rhiannon is the second youngest. But our baby sister would always say ‘I’m your big little sister’, because Rhiannon was very soft.
“So, no matter what, we always wanted to protect her. That was our priority most of our life, because Rhiannon never saw danger – Rhiannon never understood how scary the world really could be.
“But no matter what Rhiannon was just happy, always.”
Plaid Cymru have won the by-election in the Senedd seat of Caerphilly for the first time.
The Welsh nationalist party secured 15,960 votes – and candidate Lindsay Whittle cried as the result was announced.
Mr Whittle is 72 years old and had stood as a Plaid candidate 13 times since 1983. He will now hold the seat until the Welsh Assembly’s national elections next year.
This by-election was widely regarded as a two-horse race between Plaid Cymru and Reform UK, and the result marks a considerable blow for Nigel Farage.
His candidate Llyr Powell received 12,113 votes – denying a victory that would have strengthened claims that Reform can convert a large lead in opinion polls into election wins.
Nonetheless, the party’s performance is a marked improvement on 2021, when it received just 495 votes.
More than anything, the result is a humiliating and historic defeat for Labour, who had held Caerphilly at every Senedd election since it was created in 1999 – as well as the Westminster seat for over a century.
Its candidate Richard Tunnicliffe secured 3,713 votes and finished in third place, with Welsh Labour describing it as a “by-election in the toughest of circumstances, and in the midst of difficult headwinds nationally”.
Turnout overall stood at 50.43% – considerably higher than during the last ballot back in 2021.
Giving his acceptance speech after the result was confirmed, Mr Whittle began by paying tribute to Hefin David – who was Welsh Labour’s Member of the Senedd for Caerphilly until his death in August.
“He will be a hard act to follow,” Mr Whittle said. “I will never fill his shoes – but I promise you, I will walk the same path that he did.”
The Plaid politician described how he had been “absolutely heartened” by how many young people were involved in the by-election – and said the result sends a clear message.
He said: “Listen now Cardiff and listen Westminster – this is Caerphilly and Wales telling you we want a better deal for every corner of Wales. The big parties need to sit up and take notice.
“Wales, we are at the dawn of new leadership, we are at the dawn of a new beginning – and I look forward to playing my part for a new Wales, and in particular, for the people of the Caerphilly constituency. I thank you with all my heart.”
Mr Whittle quipped Plaid’s victory “was better than scoring the winning try for Wales in the Rugby World Cup”.
And looking ahead to the next year’s elections, he added: “[This] result shows what’s possible when people come together to back practical solutions and protect what matters most.
“We’ve beaten billionaire-backed Reform and, with the same determination, we can do it again in May 2026. Caerphilly has shown the way – now Wales must follow.”
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How tactical voting helped Plaid Cymru
Speaking to Sky’s chief political correspondent Jon Craig just before the declaration, Plaid Cymru leader Rhun ap Iorwerth said: “There’s clearly a real significance to the result – we are seeing the disillusionment with Labour writ large. I’ve heard it on hundreds of doorsteps, we’ve seen it in opinion polls.”
He conceded there was tactical voting in this by-election – with Labour and Conservative supporters alike backing Lindsay Whittle to keep out Reform.
However, Mr ap Iorwerth added: “I’ve spoken to literally hundreds and hundreds of people who told me – time and time again – ‘I’ve been a Labour supporter all my life, and we’re backing you this time.’
“Not begrudgingly, but because they see that’s the direction we’re going in – not just in this by-election, but as a nation. I’m calling on people to get behind that positive change – not just today, but ahead of next May.”
First Minister Eluned Morgan congratulated Mr Whittle on his return to the Senedd and said: “Welsh Labour has heard the frustration on doorsteps in Caerphilly that the need to feel change in people’s lives has not been quick enough.
“We take our share of the responsibility for this result. We are listening, we are learning the lessons, and we will be come back stronger.”
The Conservatives and the Liberal Democrats were among the parties who lost their deposits.
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