Our daughter had a stroke at 17. This is how we helped her survive it
Ten minutes after Marie Grey dropped off her 17-year-old daughter at her ballet lesson she received a call saying she had fainted in class.
Rushing back to the studio, she knew from the way Emily was lying on the floor, and how one side of her face had changed, that her daughter had suffered a stroke.
As they waited for an ambulance, Emily's condition deteriorated quickly, becoming unconscious in her mother's arms. Taken to St George's Hospital in south London, an emergency operation was undertaken to remove half her skull and control the bleeding.
It was December 1 2021: there would be no normal Christmas for the Grey family that year. Over the next two and a half years, Marie, now 51, Ian, 54, daughter Abbie, 19, and son Ben, 16, would learn to live hour by hour, day by day, but never without hope that Emily would come back to them.
A tangle of blood vessels in her brain, called an arteriovenous malformation, had caused Emily's brain haemorrhage. Similar to the one that broadcaster Clemency Burton-Hill suffered aged 39 in 2020, a rupture can take place at any time.
'It's a ticking time bomb,' says Marie. 'A birthmark on the brain is sometimes what they call it and Emily had probably had hers since birth.'
It ruptured at the point where Emily's whole life lay ahead of her. In her first year studying for A-Levels at Wimbledon High School, she hoped to become a doctor. And as well as dance, Emily was a talented runner for Surrey, a netball player, a ball girl at Wimbledon Tennis and an aspiring model, signed to Select Model Management.
'Life-changing' was the stark message Marie and Ian were given. Emily's life would never be the same.
That was if she even survived. Emily was in a grade 3 coma on a ventilator in ICU for six weeks. Even when she managed to start breathing for herself, brain scans suggested that she wouldn't have a meaningful life.
The Greys were told that Emily would never be able to stand, walk, initiate movement or conversation. The family, however, never lost sight of Emily the person, even as the medics told them brain scans showed how deep the damage was to her executive function.
Marie recalls the time a well-meaning consultant sent the junior doctors out of the room, pulled the screen around Emily, herself and Ian, and explained there was a place she could go where they remove water and food, so that she could pass peacefully away. Even then the family didn't lose hope.
'I was devastated obviously,' recalls Marie, 'but I couldn't imagine Emily lying there and us just giving up. We had that hope.
'Quite often the doctors were saying, 'What do you know?' And I said that I knew it was life-changing, I knew that she might not survive, I knew all of these things, but I also knew that Emily was now breathing on her own. I knew that Emily hadn't passed away.'
When she did wake up from the coma, it was how well her eyes tracked that became the test of how conscious she was monitored. Her family wasted little time.
'We put up a white board with two equations. One for photosynthesis and one for respiration, and we asked her to look at the one for respiration. And she looked at the right one,' recalls Marie. 'We knew that Emily was there. It was Emily.'
Those first five months aren't something Emily, now 20, can remember. As she sits in between her parents in her electric wheelchair around the family dining table in Raynes Park, all she can recall was the pain she felt in her body.
She whispers the word as Marie holds her hand. With her speech still severely impaired, it is her parents who tell her story. Emily's eyes are bright and alive with understanding. She follows our conversation with a wide smile, or a quick grimace if she disagrees, which mostly seems to be when her parents say how well she's doing. Because she always wants so much more.
'She's got a great sense of humour which is important because it can be frustrating,' says Ian, who admits to sometimes struggling to understand what Emily is saying. 'She laughs at me a lot.'
Around her neck is a chain saying 'Hell Yes'. Those two words were something of a family joke during the long months of rehab that followed Emily's stroke. 'We're Catholic, so it's probably a little naughty,' says Marie. 'But at Christmas we spotted the necklace in a charity shop and it was just meant to be.'
While they say faith has been integral to keeping them strong and positive as a family, saying hell yes every day neatly sums up the mindset needed to get Emily where she is today.
She has slowly, but surely, made progress that the medical establishment thought would never be possible. From saying her first words all over again, to taking a few steps.
The whole family has had to deal with the aftermath in their own way. At the time of the haemorrhage, Abbie was 15 and sitting her GCSEs while Ben was just 12 years old in Year 8 at school. A year later, Marie left her job as an early years primary school teacher to care for the family.
With Emily initially placed for six months at Northwick Park, an hour and a half away from the Grey family home, Marie would be there during the day, only for Ian, a patent lawyer, to take over in the evening after work.
'It was brutal really,' says Ian. 'Abbie was a year behind Emily at school, so they should have been in college at the same time. And then Abbie had to do everything first without having her big sister ahead of her.'
Emily turned 18 in Northwick Park, with an accompanying party of friends. Throughout, her school friends have been a supportive presence in her life, often with their own mothers visiting Emily when commitments made it hard for Marie or Ian to be there.
'I'd love to know all the gossip that Emily has heard over the past few years from her friends,' laughs Marie.
In November 2022 she was transferred closer to home to Kingston Rehabilitation Centre. Finally, in September 2024, she came home.
By then, Emily had regained sitting balance and was able to communicate by whispering words and using her iPad. She had also had surgery to release the spasticity in her Achilles tendons, which meant she could once again put her feet flat on the floor.
'You don't realise that stroke causes so much contraction and spasticity. In Emily's case it has seriously affected her joints and her physical movement,' says Ian.
Always hungry for more, in June last year, Emily started on a specialist rehabilitation programme at Neurokinex, an organisation that helps those living with paralysis. It has proven to be a major turning point in her recovery.
'It was wonderful to have Emily home with us but having left hospital and residential rehab, we were then at a loss as the therapy available after stroke and brain injury is very limited,' says Marie.
Emily has turned her athletic mindset towards meeting her goals. She can now stand by herself for over a minute and has taken supported walks. Her goal is to walk by herself and much more.
Academically, she is studying with home tutors for A-levels in maths, chemistry and biology. Maths, which she'd previously felt too anxious to study at A-level, is now her favourite subject. She still wants to be a doctor.
Family life is irrevocably different. There are no foreign holidays. No regular group dog walks like they used to have. However, Emily and Abbie retain the close bond they always had, frequently going charity shopping together locally. 'I still steal her clothes,' says Abbie.
Earlier this month Marie and Abbie ran the Wimbledon Half Marathon to raise money for Neurokinex, so that those less financially able can also benefit from the treatment that Emily has had.
'What has happened to Emily could happen to anyone at any time. We were so blessed to have a community and a family and the ability for me to be able to give up work,' says Marie. 'If you're a one parent family or both having to hold down jobs, it would be crazy. We want to give back.'
Ten specialist Neurokinex sessions cost £750 and the family's aim is to raise enough to give 10 people the opportunity to achieve their goals. Already, a matched donation from the Charities Aid Foundation has brought their fund total to £20,660.
'Abbie went off fast for the first 12km then slowed down to a steady pace. I think to let me catch up!' says Marie. The race is the longest either had previously undertaken. 'I had Abbie in my view for about a minute,' she adds. While they crossed the line separately, they both came in under two hours and ten minutes.
'I felt so proud of Abbie, as it's the park where she and Emily always ran together. So it was an emotional occasion. Emily was there to see us run.
'When we first chose this event she was a little upset as she always wanted to run it herself. But I have no doubt her time to run will come: she will succeed.'
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