More than 400 children are affected by stroke every year in the UK. The condition can have a devastating effect on families, few of whom are aware that their children are at risk until it happens.
On a Friday morning, three years ago, then-10-year-old Joey Tildesley-Devine had just been dropped off at school by mum, Karen.
Karen, as a member of the Parent Teachers Friends Association (PFTA), was spending the morning at the school when the head teacher pulled her out of the classroom.
“Joey was already sitting outside. He’d had a tingling sensation on his tongue so he asked his teacher if he could get some water from the sink at the back of the class,” Karen tells Stroke Rehab Times.
“The teacher heard him make a noise like a yelping puppy. She asked if he was okay but he couldn’t speak. He tried to write down what was wrong but couldn’t grasp his pen.”
Joey was slumped in the chair, his face limp when Karen arrived. He was conscious, but there was no communication.
Having worked in a nursing home with stroke patients, Karen knew straight away what had happened.
“They were already on the phone to the ambulance when I got there and they were asking all the usual questions. Can he squeeze both hands? Can he do this or that?
“I kept saying that he’d had a stroke and we needed an ambulance but there weren’t any available. And because he was still conscious, it wasn’t classed as an emergency.”
Only 18 minutes had passed since that initial call, but to Karen, it felt like a lifetime. She couldn’t wait any longer, so she told the TA to ring again to let them know that Karen and her husband would take Joey to hospital themselves.
It was a decision that weighed heavily on Karen for a while.
“We took him from a safe place. He had a fit in the back of the car so I had to resuscitate him.
“But after speaking to ambulance control, at that point, there was there was nobody assigned to us. The closest ambulance was 18 minutes away.
“So actually, that decision saved his life. So that was a massive weight off my shoulders.”
Karen works at Whiston Hospital, so she rang her unit and asked them to get a team of doctors ready for their arrival. They were met by a consultant Karen had been in an emergency with a week before, so they knew Joey was in good hands.
While Karen was certain it was a stroke, the medical team had to rule everything else out. Had there been any chickenpox or cold sores? Had they been away on holiday?
“The consultant just said, I’m going to do a head scan to rule out any kind of brain injury. But actually, that was the answer.
Joey had had an AVM rupture. We didn’t even know he had an AVM. There had been no signs of anything.”
The rupture caused a massive bleed on his left hemisphere, about a quarter of his brain. And once he had passed out during the fitting, Joey didn’t regain consciousness again until after surgery when they woke him up from the coma.
Joey was transferred to Alder Hey Children’s Hospital.
“The brain surgeon told us that if he didn’t operate, Joey wouldn’t make it. We had to go through that surgery. It was the biggest, longest afternoon we’d ever experienced.”
But every minute that passed was good news. Joey was still with them. If someone came to see them too soon, they would know he hadn’t made it.
Someone finally came around tea time to confirm that the surgery was over and Joey was okay, but he wasn’t out of the woods yet.
Finally, on the Sunday at PICU, they woke him up. The family was urged to be realistic about his recovery prospects.
“Because of where the bleed was, they said he might not be able to communicate with us anymore or know who we are. He might be a different version of the little boy he was.
“But he’s just the same Joey as he was when he went in. He does have quite a dense right-sided weakness, moreso in his upper limb. He can walk now.
“Three years down the line, we’re still very heavily in the rehab part and that might well be how he is forever. We just don’t know.
“But he’s here and he can speak. As long as he can speak to us, we’re happy. That’s so important. He can and he’s amazing.”
“One of the healthcare assistants at the rehab said, ‘we’ve had children in a worse condition than Joey. We’re telling you, he’ll walk out of here.’ And he did.
“He’s got a lot of years, he’s got his health and his youth on his side, which is a massive thing.”
Joey is undergoing plenty of rehab, including sessions with a private physio once a week and occasionally with a community physio. Swimming too, along with regular walks on an anti-gravity treadmill.
Of course, Covid hasn’t helped, so Karen and Dad Nick have stepped in and done what they can and whatever Joey will allow them to do. Some days, he doesn’t want to do physio and just want to live a normal life.
But Joey, like his mother, is keen to give back to those who have helped him along the way.
Over the past three years, the 12-year-old has taken on fundraising challenges in aid of The Children’s Trust, Mac House, Whiston Children’s A&E and various departments at Alder Hey who helped save his life. Joey has raised £11,542.53 at the time of writing.
“We just think there’s so many people involved and we can’t thank them enough that he’s here.
“That’s just our little way of being able to say thank you to the people that have helped him.
“Plus, there’s little tasks, like this month’s which was do 24 hours of exercise. That’s really just about making Joey do what he needs to do, but raising funds for other people encourages him to get involved.”
