Doctors said Trey, 11, just had a stomach bug. Now the schoolboy is in a coma fighting for his life and a heart transplant is his only hope...
It was the type of upsetting yet commonplace problem most parents face from time to time.
Early last month, the Taylor family were on their way home from a meal out when Trey, 11, began feeling sick.
Mum Elise, 38, recalls: 'He started complaining of a really bad stomach ache as soon as we finished eating, and then was sick as we were getting to the car.'
Back at home in Milton Keynes, assuming – as any mother would – it was just something he'd eaten, Elise tucked Trey into bed.
'By the next morning he had started to perk up a little, so we gave him some electrolytes to rehydrate and by the day after he really wasn't too bad,' she adds.
But it was, in fact, the start of a harrowing ordeal that just three days later would see Trey placed on life support and in desperate need of a heart transplant.
That evening Trey became unwell again. 'He said he felt a pressure on his chest, like someone was sitting on it,' says Elise.
'I called our GP first thing the next morning but, by the time I got through all of the appointments for that day were booked up and they said they couldn't help. I asked the receptionist if it was normal to have chest pain with norovirus. She just told me to call 111.'
After complaining of a stomach ache, schoolboy Trey, 11, found himself in hospital on life support and in desperate need of a heart transplant
Trey's mum Elise, 38, said she assumed - like any mother would - her son's stomach ache was the result of something he had eaten
Elise and her husband Dan Taylor, 34, a scaffolder, rang the NHS helpline and were eventually called back by a clinician who gave them a face-to-face appointment for 9pm that evening.
They managed to get through most of the day, but by 6pm Trey's condition rapidly worsened.
Elise and Dan noticed their son's skin had started to mottle and a faint blue line had appeared above his top lip, so they bundled him into the car and raced to their local urgent care centre.
'The doctor there was still asking whether he could have got food poisoning from the beef burger he had eaten at dinner days before,' says Elise. 'But it was clear something was very wrong when they tried to test his oxygen levels [in his blood] but couldn't get a reading from his hands or feet because he had no circulation in them.'
Within 20 minutes Trey was rushed to A&E. Though it's not standard protocol to X-ray a child with a sickness bug, the quick-thinking doctor immediately ordered one. The scan showed Trey's heart had ballooned in size and was surrounded by fluid.
As a team prepared to transfer the family to the Royal Brompton – a specialist heart hospital in west London – Elise and Dan received life-changing news: their 11-year-old son, who just days before had been racing around the garden with his cousins, had multiple organ failure. And without a heart transplant, he would die.
'We were in complete shock – he had never had any serious medical issues before and no cardiovascular abnormalities had ever been picked up by doctors,' Elise says.
An x-ray in hospital showed Trey's heart had ballooned in size and was surrounded by fluid and was told he had multiple organ failure. Without a heart transplant, he would die
Trey with his dad Dan Taylor, 34, a scaffolder, who says he and his wife are so grateful for everyone who is on the organ donation system
'Poor Trey was awake and responsive the whole time. He's a very clever kid and loves the CBBC medical show Operation Ouch, so he was very aware of what was happening. At one point he even looked up at me and said, 'Mum, why do I have a defibrillator on my chest?' He could tell it was serious.'
Trey was put into a medically induced coma and placed on an extracorporeal membrane oxygenation (ECMO) machine that temporarily replaced his heart and lung function by pumping blood through an artificial lung.
'Before they put him into a coma, we had to tell him that he was going into a big sleep to help his heart,' says Elise.
Nearly three weeks later, Trey is still on life support. His kidney and liver functions are slowly returning, but his heart can't repair itself from the damage.
And until he is able to receive a transplant, allowing his heart to be tested, his doctors won't know exactly what made Trey so ill.
The team of specialists treating Trey suspect he experienced dilated cardiomyopathy, a heart condition that causes the organ to enlarge and weaken, making it difficult to pump blood. Without prompt treatment, this can lead to heart failure and death.
Despite Trey's uncertain future, the family are speaking out to raise awareness of the symptoms.
'Trey had a very sudden onset of symptoms, including mottled hands and feet, a visible pulsing in his neck and a change in his colouring,' says Elise. 'I'm not suggesting that all sickness bugs are heart failure, but if your child shows any of these signs get to a doctor as soon as possible and push for at least a chest X-ray.
'Heart failure can present as many other ailments – sepsis, infection or sickness.'
Dilated cardiomyopathy affects roughly one in every 250 people in the UK – but just 0.001 cases per 250 children.
In Trey's case, doctors believe it may be the result of an earlier chest infection he suffered before Christmas, but can't be sure without dissecting his heart.
Though he took a course of antibiotics and steroids, the infection could have travelled to his heart, explains Elise. 'In some cases the flu or an infection can manifest in the heart. His doctors say they've seen it happen in adults.'
As they wait at their son's bedside, Elise and Dan say they're so grateful for everyone who is on the organ donation system.
'One person who chooses to donate their organs could save nine people's lives. I really want to urge people not to opt out of the donation programme,' says Elise.
In the meantime, the couple and their 18-year-old son Ty are desperately missing Trey.
'Trey is a very polite young soul and a star student at school – all of his teachers have been sending us such lovely notes about him,' she adds. 'He loves technology and is really helpful around the house – even fixing his Nan's Kindle for her. If we can be lucky enough to save his life, he'll really make a difference in the world.'
The Taylor family are raising money for their living expenses on Go Fund Me (gofundme.com/f/our-trey-treys-journey).
What's the difference between MND and muscular dystrophy?
Both are incurable conditions which affect the muscles and cause a loss of mobility.
Motor Neurone Disease (MND) is a condition where the nerve cells controlling movement gradually die.
It typically develops in later adulthood and affects movement, speech, swallowing and breathing.
Symptoms can be managed with medicine, physiotherapy and breathing support.
Muscular dystrophy is a group of genetic diseases that cause progressive muscle weakness and loss of muscle.
It can begin in childhood or adulthood and affects the heart and breathing. Physical and speech therapy may be used to ease symptoms, as well as surgical intervention.
