Caernarfon boy with rare muscle condition receives birthday surprise from car party

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A YOUNG boy from Caernarfon who suffers from a rare muscle condition received special treatment when members of a Bangor-based motoring club visited his home to wish him a happy birthday.

Hari Jones suffers from X-linked myotubular myopathy, a rare disease primarily affecting the muscles used for movement, and his family is currently facing an uphill battle to keep him at home.

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

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

Hari’s father, Michael, said he was moved by the efforts of the group, who also came to visit him after his return from Alder Hey in 2020.

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

“He loved it, and they gave him a cute little hoodie. They always keep in touch; there’s always a message here or there to see how we’re doing, they always have Hari’s thoughts (in mind) and always say he’s part of the group.

“He was born with a fairly rare disease; only a handful of children in the UK have it, mostly boys. He really can’t do anything for himself; he gets to the point where he can’t even blink.

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

“They managed to find him a home (suitable for his medical needs), which was brilliant and life changing.

“But unfortunately lately we have lost the care package for him so the company has not been able to maintain staff capacity for his care so the only option given to us is that he should go to a hospice in Chorley.

“A lot of people don’t realize that with Hari’s condition you have to be awake with him all night because there’s so many interventions, clearing his throat of secretions to keep him alive, so he must be awake.

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

“It’s been stressful enough being apart for so long, and now potentially we have to do the same thing again.”

Midnight Runners visit Hari’s house for his sixth birthday. Photo: Nathan Owen

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

Michael added: “He was always in his cars. In his bedroom, he has huge photos of cars on his walls, and the first thing he does in the morning is go to his iPad, straight to YouTube, and scroll through different videos.

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

“With his electric wheelchair and everything he has, it’s quite difficult to get around, especially because we don’t have the staff to help us, so it was good to have people coming to our door to cheer him up and cheer us up.

“We are going through such a stressful time right now; it was good to see him happier.

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

Nathan added that this kind of work was exactly what he had in mind when he took over the leadership of the group, which has around 4,400 members on Facebook, several years ago.

Nathan said: ‘After the first lockdown his dad posted on our page saying he (Hari) sits by the window everyday because they couldn’t get him out so if someone walks by someday could we please beep or wave to him.

“I messaged him and said, ‘I’m going to do better, get us down a lot and stay for an hour or two, obviously doing it out the window.’

“It went really well and gave him hope, so his dad messaged me and asked if I could say happy birthday to him, so we came to his new house on Saturday for him. wish him a happy birthday and give him gifts.

“I was surprised by the number of people who came, given the weather! It went well, and he (Michael) got a little emotional, I think, towards the end.

“We talked to him about personal issues, and I think that was good for him, because he’s a car enthusiast anyway. He can’t attend our meetings, so in a way, we brought the meeting.

“The people who put it up (Midnight Runners) were ‘boy racers’. The idea behind my endorsement was to use this platform for good, using the number of members we we have to raise money for charity, and things like that.

To learn more about Midnight Runners, visit: www.facebook.com/groups/2253315808066912.

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