A home from home: Josh's story

Thanks to mum Jayne’s quick thinking, nine-year-old Josh was rushed into life-saving surgery. She and her family, including partner Ben, daughter Astrid, and brother Jack, had no idea what was coming next. They would soon become one of Edinburgh House’s longest staying residents as Josh battled through rehabilitation. Dad Ben, an engineer from North Berwick, tells his story.

When Josh was little, we realised he had attention deficit hyperactive disorder (ADHD). Jayne’s son Jack, who’s 21 now, had been in hospital a lot as a child. I was nowhere near as prepared.

It all started back in October 2021. We knew that Josh had been suffering with his ADHD, and I remember one afternoon, he and his mum were out pumpkin picking. He’d complained of feeling sick, and Jayne rang me to tell me what was happening.

Soon, he was completely unresponsive. Jayne phoned an ambulance. In those 15 minutes, Josh had had four seizures – we later found out he may not have made it had Jayne not acted so quickly.

He was taken to Edinburgh Children’s Hospital, where they discovered an arterial venous malformation in his brain. This essentially means a cluster of veins in his head were not regulating pressure correctly. Doctors later told us they’d likely been swelling for up to a year – and had eventually exploded.

This formed a clot on the left-hand side of his brain, which paralysed the entire right side of his body. He couldn’t walk or talk – he was essentially a new-born at nine years old. As we waited in hospital, we were told he would have to be operated on immediately.

He spent four days in intensive care, and would need another operation three weeks later. I remember emotions running high – I wanted to block it out as Jayne rang round her family. Her son Jack had had a similar experience when he was born. She was so strong in the hospital.

After our second night, we were offered a room at the Ronald McDonald House Edinburgh. We’d never heard of the Charity before, but they were so welcoming. I remember Dominique taking me in and showing me around all the kitchen and play areas. I was absolutely taken aback by it all. The kitchen was amazing; we had our own fridge space and our own independence – but communal areas when we needed them.

Josh got through his second surgery brilliantly, but there was a long road ahead. He would have occupational therapy and physio every day. The first few weeks were hardest as he couldn’t walk or talk. It’s still a work in progress – it’s a case of if his movement comes back. We’re seeing flickers in his right foot right now, but only time will tell.

In the end, he was in hospital for four months. By Christmas time, we’d started getting weekend passes for the House. They even let our youngest daughter Astrid stay with us at the weekends. She’d be with family all week and go to nursery while we stayed with Josh. Astrid wasn’t allowed on the ward with the new Covid wave, but it was great for Josh to see her when he was finally allowed into the House.

Josh was eventually discharged in February. We’d been in the House for four months – I think we were the second longest residents. It was incredibly difficult for us. With Josh’s ADHD, he insisted on having us around at all times. He didn’t like nurses helping him with things like going to the toilet, so Jayne or I always had to be around.

After a while, Astrid had become friendly with the other families and staff in the House. Everybody was so welcoming. We struck up amazing relationships with other families. It’s comforting to know you’re not alone going through this.

Leaving was really hard because we’d made such good friends, but we still see them to this day. We go back and visit, and bring each other Christmas presents. It’s lovely to know we can still see them – they’re only a 45-minute drive away.

We’ve since been working on fundraising activities – Jayne’s friend Gareth and her brother, Michael, ran a website offering competition prizes to raise funds, and then Gareth did the Three Peaks Challenge. We raised enough to keep the House running for a day – it’s incredibly expensive at £900 a day, and we appreciate how much hard work goes into it. We’re so grateful for the help of the House Manager, Gary, as well as Helen and Dominique.

Josh has come along in leaps and bounds. You’d think he was just a regular nine-year-old boy. We have to keep an eye on him, but he’s improving every day. We’ve made lifelong friends thanks to Ronald McDonald House Charities UK and we couldn’t be more grateful for their support.