A YOUNG Caernarfon boy who suffers from a rare muscular condition enjoyed a special treat when members of a Bangor-based car club drove to his house to wish him a happy birthday.

Hari Jones suffers from X-linked myotubular myopathy, a rare condition mainly affecting muscles used for movement, and his family are currently facing a tough battle to keep him at home.

Hari, a car fanatic, turned six on Sunday (February 13), so to celebrate with him, members of the ‘Midnight Runners’ group paid him a special visit on Saturday.

About 15 cars, including an Audi A3 and a Ford Focus ST covered in Monster Energy stickers, turned up for Hari, who returned home in July 2020 after 28 months in Alder Hey Children’s Hospital in Liverpool.

Hari’s father, Michael, said how moved he was by the efforts of the group, who had also previously been to visit him following his return home from Alder Hey in 2020.

Michael said: “They (Midnight Runners) came when he came home in 2020; because of COVID, we were isolating and stuck in the house, and he could only go to the window, but this time, because it was easier to get outside, he was able to go to the drive and see the cars.

“He loved it, and they gave him a nice little hoodie. They always keep in contact; there’s always a message here or there to see how we are, they’ve always got Hari’s thoughts (in mind) and always say he’s part of the group.

“He’s been born with quite a rare condition; only a handful of children in the UK have it, mainly boys. He can’t really do anything for himself; it gets to the point where he can’t even blink.

“Because of this condition, he’s got a tracheotomy in his throat that goes to a ventilation machine. Basically, he’s on a life support machine. He’s been in hospital for most of his life.

“They’ve managed to sort out a house (adapted to his medical needs), which has been brilliant and life-changing for him.

“But unfortunately, lately, we’ve lost the care package for him, so the company weren’t able to keep the capacity of staff on for his care, so the only option given to us is that he’d have to go to a hospice in Chorley.

“A lot of people don’t realise that, with Hari’s condition, you’ve got to be awake with him all night because there’s so much intervention, with clearing his throat of secretions to keep him alive, so he needs to be awake.

“It’s a life-limiting condition, and we as a family have been apart for so long, because I was in hospital at the same time, from 2018 until 2020, my daughter was back in Wales with her grandparents, and my partner was everywhere, trying to help us out.

“It’s been quite stressful to be apart for so long, and now, potentially, we’ve got to do the same again.”

North Wales Chronicle: Midnight Runners' visit to Hari's house for his sixth birthday. Photo: Nathan OwenMidnight Runners' visit to Hari's house for his sixth birthday. Photo: Nathan Owen

But despite the uncertainty, Michael, a fellow car enthusiast said this birthday surprise for Hari provided a timely moment of respite for his son and his family.

Michael added: “He’s always been into his cars. In his bedroom, he’s got massive pictures of cars on his walls, and the first thing he does in the morning is go on his iPad, straight onto YouTube, and scroll though different videos.

“Because his ability to do things is limited, it was nice that he could see things like this.

“With his electric wheelchair and all the stuff he’s got, it’s quite hard to go places, especially because we haven’t got the staff to help us, so it was nice to have people come to our doorstep to cheer him and us up.

“We’ve been going through such a stressful time at the moment; it was nice to see him happier.”

Nathan Owen, one of four organisers of Midnight Runners, said he was only too happy to help make Hari’s day.

Nathan added that this sort of work is exactly what he had in mind when he took on the running of the group, which has roughly 4,400 members on Facebook, several years ago.

Nathan said: “After the first lockdown, his dad posted on our page saying that he (Hari) sits by the window every day because they couldn’t take him out, so if anyone was ever passing, could we please beep or wave at him.

“I messaged him and said: ‘I’ll go one better, and bring a whole lot us down and stay for an hour or two, obviously doing it through the window’.

“That went really well and got his hopes up, so his dad messaged me and asked if I could say happy birthday to him, so we came to his new house on Saturday to wish him happy birthday and give him some presents.

“I was surprised by how many came considering the weather! It went well, and he (Michael) was a bit moved, I think, towards the end.

“We spoke to him about the personal issues, and I think it was nice for him, because he’s a car enthusiast anyway. He can’t attend our meets, so in a way, we brought the meet to him.

“The people who set it (Midnight Runners) up were ‘boy racers’. The whole idea behind me taking it over was to use this platform to do good, using the amount of members that we have to raise money for charity, and things like that.”

For more on Midnight Runners, go to: www.facebook.com/groups/2253315808066912.