After sepsis left her husband disfigured, Nic Ray suffered an emotional breakdown

Just weeks before NIC RAY was due to give birth to her second child, her husband nearly died when a case of suspected food poisoning turned out to be sepsis. What happened next left her married to a man she barely recognised – and their heart-rending story has now been made into a film 

Nic Ray is, by her own definition, irrefutably low-maintenance. So much so that when the YOU photographer tentatively suggests that she might want to apply a little make-up before stepping in front of the lens, Nic has to confess that she doesn’t own any. 

Within a couple of minutes, however, because she is ever resourceful, she has rummaged around her teenage daughter’s dressing table and returned with freshly applied lip gloss. 

'Nothing is hidden between us,' Nic says. 'We've been to places no normal couple would have to go'

Nic with her husband Tom, whose face was left disfigured after suffering from sepsis -  a reaction to an infection that causes the body to damage its own organs and tissues

To those who know Nic of old, her lack of camera readiness might seem surprising. A former film director, she spent many exhilarating years during her 20s and early 30s making documentaries, music videos and advertising promotions, and knows instinctively what is involved in projecting an image. 

For those who know of her life today, however, it is easy to understand why her own appearance merits not even a nanosecond of thought. 

‘The old me would have been to the hairdresser and bought a new outfit before you arrived,’ she says. ‘But that version doesn’t exist any more. I had to kill her off because her life had none of the responsibilities I have now.’ 

The cataclysmic event that turned Nic’s world on its axis began one December night, not with an explosive drama, but with her husband Tom complaining of cold hands and a headache. 

Through the early hours, he was sick several times, which led them both to assume that he had a severe dose of food poisoning. 

In fact, Tom, then aged 38, had sepsis, a condition where the immune system goes into overdrive in response to an infection, damaging its own tissues. 

His condition deteriorated so rapidly, and there were such delays in getting a correct diagnosis, that within 24 hours, Nic, who at the time was eight and a half months pregnant with their second child, was told Tom had only a one in ten chance of pulling through. 

Miraculously, he did survive, but at terrible physical cost. When he returned home nine months later, he was a quadruple amputee with severe facial disfigurement. It’s a sobering thought that 150,000 people in the UK develop sepsis every year; of those 44,000 die. 

The illness is more common than heart attacks and has a higher death toll than bowel, breast and prostate cancers combined. 

Yet awareness remains alarmingly low – although thanks to Nic and Tom, that is about to change. 

Tom says he is ‘truly blessed’ to have Nic. ‘Despite everything, I feel as though I am the luckiest guy in the world because I’ve had the chance to live half a lifetime with the one person I was destined to be with’

This month sees the release of Starfish, a movie already being billed as one of the most affecting British films of the year. Starring Joanne Froggatt and Tom Riley, it depicts – with terror but also rare honesty – the devastating fallout of Tom’s illness, Nic’s heroic struggle to cope and, ultimately, the love and hope that has held their family together in the ensuing years. 

The backstory to Tom and Nic’s love affair might have been a film script all of its own. 

Now both aged 54, the pair met as first-year university students at Exeter in the early 1980s. 

‘The moment I saw Nic, I fell in love with her,’ says Tom. ‘He was definitely my type – small, dark, intense. There was an aura about him,’ Nic remembers. 

But Tom already had a girlfriend back home, and as his father had abandoned his mother when he was five, Tom had firm notions about loyalty. 

‘I thought once you were with someone, you had to stay faithful; that you shouldn’t ever break up and hurt someone like my mother had been hurt,’ he explains. 

Throughout their student years, Tom and Nic’s paths crisscrossed constantly and Tom confesses to assiduously rebuffing Nic to the point of rudeness. 

After graduating, he married the girl from home – and within three years it was over. 

Nic, meanwhile, had no boyfriends while at university, but in her early 20s embarked on a long-term relationship, which ended just before she hit 30. Several months later, out of the blue, a letter dropped through her door that read: ‘I remember you. Do you remember me? Tom Ray.’ 

Nic and Tom on their wedding day in 1998

Tom and daughter Grace in St Ives, in 1999

Stunned, Nic replied with a jokey card and her phone number. They met for a drink the following weekend, ‘and that was it – kerboom,’ Nic recalls. ‘I’d always felt he was the one – he’d just taken a long time to let me know he felt the same way.’ 

Within a year, they were living together, and within two, in March 1997, they had their first child, Grace. 

‘It was as though the stopper had come out of the bottle – that decade of romance, excitement and creativity that we had missed was suddenly ours, all at once,’ Nic explains. 

Tom had been working in a bank, but his real passion was writing and acting (he had won a national novel-writing prize at the age of 18 and enjoyed leading roles in plays while at university). It made sense for him to give up the day job and combine childcare with developing a scriptwriting career while Nic went back to the filmmaking work she loved. 

In 1998, they found a window in which to get married, and by December 1999 – the point where Starfish picks up their story – Nic was just weeks away from giving birth to their son Freddy. 

Early symptoms of sepsis – fever, headache, muscle pains – make the condition easy to confuse with everyday illnesses, although with hindsight Nic can identify other warning signs. 

After being sick through the night, Tom urged Nic to keep the curtains closed ‘because the brightness was hurting his eyes’. 

They believed Tom had food poisoning because he had eaten some out-of-date sausages the night before, but Nic was worried enough to call the GP, who arranged for her to pick up an antiemetic (an anti-vomiting drug) from the pharmacy. 

‘Tom rallied a bit and came downstairs to watch some telly,’ Nic recalls. 

That afternoon, she went to see her mother, who was looking after Grace, so that Tom could rest quietly. She returned alone to their cottage at dusk ‘and as I walked through the door, I remember the feeling of “wrong,”’ she says. ‘The house was in darkness and Tom was on the sofa, his face grey and his lips blue, shaking and starting to lose consciousness.’ 

She called the GP, who came to the house and thought Tom might have had an allergic reaction to the antiemetic. 

An ambulance arrived, Tom was rushed to A&E where ‘they did the usual tests, and all the time he was getting colder and colder and his blood pressure was dropping through the floor, but nobody was doing anything about it – they didn’t even give him a paracetamol,’ Nic says. 

She can recall that night in minute-by-minute detail because she has relived it a million times. Tom was admitted to a medical ward and for hours, as Nic sat with her uncomfortably large pregnancy bump in the cramped space by his bed, doctors came and went and scratched their heads. 

At 11pm, as a wildfire rash spread across his chest, Tom was told, ‘to go to sleep’. 

Only at 4am, when he started bleeding from his eyes and Nic screamed for help, was he moved to intensive care. 

Nic was removed to a side room, while Tom’s body was rammed with antibiotics. At 6am, a doctor told Nic that Tom had sepsis and that nine out of ten patients in his condition don’t survive beyond 24 hours. 

She was advised to summon relatives and within an hour her mother arrived with Grace. 

‘I went to the lift doors to meet them – and this was the very worst moment,’ she says, choking back tears at the memory. ‘Grace came rushing out to meet me, pushing her toy buggy and saying, “Is the baby here?” And I had to tell her, “No, baby’s not here yet, but Daddy’s not very well.” 

'I was galvanising every ounce of acting power I had to hold it together, but the adrenalin was rushing and I was hyper-aware of being on that razor edge between our lovely past and a nightmare future.’ 

If left untreated, sepsis can cause plummeting blood pressure, clotting and multiple organ failure. Once blood and nutrients can no longer reach the body’s extremities, the flesh begins to die. 

This was why Tom’s hands and feet had felt so cold and why, within a week, surgeons had to begin amputations, first of his fingers and toes, and then of his hands and feet, gradually working, through ‘revisions’, up his arms and legs to his elbows and knees to arrest the gangrene. 

Nic also had to consent to the devastating cutting away of necrotic areas of his face – the nose, lips and surrounding flesh – and also part of his tongue. 

Tom remained in a coma, his life hanging by a thread, for more than two months. In mid-January, Nic went into labour with Freddy (two weeks late) as Tom underwent yet more amputations. 

‘I remember the nurses relaying messages about the surgery as I gave birth,’ she says. There followed several more months after Tom came round in which he needed stabilising and rehab. Nic saw him daily, with a breastfeeding Freddy in tow. 

Tom with Grace in 1998

When she brought Grace, then aged three, to the hospital, she took one look at Tom’s still raw facial wounds, cried, ‘That’s not my daddy,’ and fled down the corridor. 

The medical team were monitoring Tom closely, but in retrospect, Nic realises, they were also evaluating her. 

‘Everyone is sussing you out, deciding how well you are going to manage, whether you’ll crack,’ she says. 

Nic, the South London-born daughter of a housing officer father and shorthand typist mother, exudes calm under pressure. 

‘I’m not someone who collapses in a heap, but to be honest, I wish I had given out more of a sense of vulnerability. Keeping strong gets you through the emergency phase, but it is also self-destructive, and you end up paying for it further down the line.’ 

Once Tom was discharged from hospital in August 2000, Nic took responsibility for all his physical needs – the changing of dressings on his stumps and the administering of a cocktail of drugs (his spleen and adrenal glands were destroyed and his heart and kidneys permanently damaged). 

She also had to be Tom’s psychological buffer as he adjusted to the limitations of his ravaged body and looks. 

Even today, there are few mirrors in their home in Oakham, Rutland. 

‘Tom can look at himself, but he would never dwell on his reflection,’ Nic says. 

WHAT IS SPESIS? 

Sepsis, or blood poisoning, is a reaction to an infection that causes the body to damage its own organs and tissues. 

If not spotted and treated quickly, it can rapidly lead to organ failure and death. 

Its key symptoms include: 

• Slurred speech, which is triggered by a lack of blood supply to the brain. 
• Mottled or discoloured skin anywhere on the body. 
• Extremely painful muscles due to a lack of oxygen. 
• Passing no urine in one day, as the kidneys stop working properly. 
• Severe breathlessness. The body senses there isn’t enough oxygen getting to the brain, so it increases the ‘drive’ to breathe to increase it. 
• Chronic tiredness and swelling of the affected area. 

This year the government announced funding for a campaign by the Sepsis Trust to improve public awareness of sepsis, empowering people to ‘Just Ask: Could It Be Sepsis?’ 

Earlier recognition of the condition could save 14,000 lives each year in the UK. 

For more information, visit sepsistrust.org  

She recalls how, in the early days, as Tom sank into a deep depression, he would ‘sit and stare at the wall for hours’. 

Distressingly for them both, he had lost huge chunks of memory. 

‘So much of a relationship is shared memories, but although Tom could remember our student days, our wedding, Grace’s birth and so many other landmarks were blanks to him. It felt as though a stranger had come home.’ 

With the help of family and friends, Nic organised an appeal to raise funds for more technologically advanced prosthetic limbs than those provided by the NHS. 

They also consulted a lawyer in the hope of constructing a medical negligence case. 

An investigation identified the likely cause as a dental appointment Tom had a few days before being taken ill. 

The dentist had inadvertently nicked his gum and because Tom had been suffering from a niggling chest infection, the probability was that the localised infection had entered his bloodstream through the cut in his mouth, leading to sepsis. 

‘There was a third factor: for some reason his immune system was barely functioning. We don’t know to this day why that was,’ says Nic. 

But the bottom line was that the negligence case was a complex long shot and would require funding they didn’t have. 

Nic was juggling all this while also being a mum to two small children. She had the support of her mother Jean, and Tom’s mother Angela and his sister Nina, a former nurse, were also on hand. 

They also had a nanny for Grace and Freddy – until their savings ran out. Going back to work was not an option as ‘Tom needed too much care’, so they sold their beautiful period cottage and moved in with Jean. 

Nic is candid enough to admit that, more than once, she thought of leaving Tom. 

‘You can’t help yourself. These thoughts just come into your head. But every time I contemplated walking away, I also thought, “How can I? If I do, Tom will die, because he will have utterly lost the will to live.”’ 

What she could no longer do was make love to him. The scarring to Tom’s face – he has no lips – means that not even a kiss is possible. 

‘We haven’t kissed since it happened,’ she says. There is a heart-rending scene in Starfish where Tom reaches out to her in bed and she cannot turn towards him. And another where she tells him, ‘I’ll never stop loving you, Tom, never stop believing in you. But I can’t make love to you. I can’t be that girl any more. I’ve seen, done, things no lover should ever have to.’ 

‘Tom looks at me and I am the same,’ Nic tells me now. ‘But I look at him and see total devastation. He was still Tom on the inside, but I was playing so many mind games just to get through the days.’ 

Joanne Froggatt as Nic in Starfish, the film which tells the heartbreaking tale of Tom and Nic's journey

After four years, Nic had a nervous breakdown. She recalls being ‘in the corner of the room, banging my head against the wall, and Mum saying, “We are going to see the doctor.”’ 

She was treated for grief, for the life she had lost, and post-traumatic stress disorder – and given six sessions of counselling, the maximum available on the NHS. 

Around the same time, after consulting a leading plastic surgeon in London, Tom was told nothing more could be done to improve the appearance of his face. They were at rock bottom. 

Their salvation has been the children: Grace, now 19, who has just started university, and Freddy, 16. 

‘I’m sure, particularly in the early days, Tom thought about his medicine chest full of drugs and what he could do to himself, but wanting to be here for Grace and Freddy has brought him back from the brink,’ Nic says. 

‘For both of us, having them around has been massive. They’re entertaining and they need us.’ 

The NHS eventually provided Tom with myoelectric prosthetic arms, which work on nerve sensors and gave him back the ability to grip, lift and hold (the few thousand pounds the family had raised through events such as a charity bike ride were swallowed up by emergency living costs). 

Tom learned to drive an adapted car and in 2004 he secured a job in a local call centre, where he still works. 

‘It’s minimum wage, but it has been huge for his self-esteem,’ Nic says. 

Today, Tom is determinedly independent – he refuses to use a wheelchair or have handrails around the house. 

Many conversations have helped plug the gaps in his memory, and although the dynamic, high-energy side of his personality has mellowed, he remains gentle, wry and a great storyteller. 

The breakthrough for Nic came after she enrolled on a life-drawing evening class, which led to her studying a fine art degree part time. 

Post-nervous breakdown, she found that painting gave her a way to express herself that no words could. 

She drives me to her studio, a ramshackle room in a converted barn, full of art books and junk-shop furniture. 

The family home, which they share with her mother, doesn’t reflect who she truly is, she explains, just as the clothes she wears – mostly hand-me-downs or charity-shop buys – are not necessarily to her taste. But this place,’ she says sweeping her gaze around a collection of canvases, ‘this is me. This is who I am.’ 

Starfish came about through a serendipitous encounter eight years ago with writer and director Bill Clark, whom Nic knew from her filmmaking days. 

They bumped into each other in Oakham, went for a coffee, ‘and it was like mainlining back to my old life,’ she recalls. 

Bill knew Tom had been ill, but not about the aftermath. He began researching and writing, collaborating with Tom and Nic at every stage. 

Financing independent productions is never straightforward, but finally, last year, the team was assembled. 

Nic in her studio, a private room in a converted barn, full of art books and junk-shop furniture

The actor Tom Riley is, Nic says, a dead-ringer for Tom, before sepsis, ‘so that was weird’. 

As for the casting of Joanne Froggatt, the Yorkshire-born star of Downton Abbey (she played lady’s maid Anna Bates), as herself, Nic’s first thought was, ‘She’s blonde and northern; I’m dark and a southerner, so how does that work? But, like me, she has an inner steel – you don’t want to mess with her. She’s been fantastic.’ 

Tom appears on screen as a body double and both he and Nic spent a lot of time on the set. 

In cash terms, the film is unlikely to change their lives, but the process of making it has profoundly enriched their relationship. 

‘It’s brought us to a real point of honesty,’ Nic says. ‘Nothing is hidden between us because we’ve been to places no normal couple would have to go.’ 

Tom tells me he is ‘truly blessed’ to have Nic. ‘Despite everything, I feel as though I am the luckiest guy in the world because I’ve had the chance to live half a lifetime with the one person I was destined to be with.’ 

And despite everything, it is still possible, says Nic, to find moments of perfect bliss. 

This summer they went, as they have done for the past 20 years, to St Ives, Cornwall.

 ‘Tom and I sat drinking coffee, looking at Grace and Freddy on the beach in their wetsuits and thinking about how much they have grown. And when we are there together, sharing those precious moments, nothing else matters.’

Starfish will be in cinemas from 28 October

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