Caernarfon boy with myotubular myopathy leaves hospital

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media captionHari had spent 28 months in Liverpool's Alder Hey Children's Hospital

A four-year-old boy has been given a special send off after spending 28 months in hospital.

Hari Jones from Caernarfon in Gwynedd has myotubular myopathy, which means the muscles he uses to breathe and swallow do not work.

Merseyside Police gave him a guard of honour as he left on Tuesday.

His father Michael Jones said he had spent so much time at Alder Hey Children's Hospital in Liverpool he had developed a Scouse accent.

image copyrightFamily photo
image captionHari and his sister Tiami

Later the family were met by a police biker and a roads policing BMW and escorted home with blue lights.

He has also been made an honorary child police officer.

Speaking to BBC Radio Cymru's Post Cyntaf programme Mr Jones said: "It was a hard and long time."

At one point both Hari and his father were in intensive care in separate hospitals after Mr Jones suffered a clot in his liver.

The family lost their home as Mr Jones was too unwell to work.

image copyrightFamily photo
image captionHari needs to continually be on oxygen

Many with Hari's condition do not survive their first year of life.

Mr Jones said of his son's condition: "It's life limiting, he'll never get better.

"He's on life support 24/seven. A lot needs to be learned about the condition. There are only 17 cases, I think, in Britain."

The coronavirus pandemic has meant Hari has had to go home to an unsuitable house as building work had to stop on a new home being built that can accommodate his wheelchair.

His father said: "It was important to get him out of the hospital. He was isolated in the hospital in one room."

His parents had to take it in turns to see him.

"He now has a temporary bedroom in the living room but he can't get in and out of the house. There's no room in the house but we make it work."

PC Scott Martin from North Wales Police's roads policing unit said: "We know that Hari loves the emergency services so we were only too happy to oblige.

"It was lovely to see his face light up today when we turned up to welcome him back home. We wish him and his family all the best with settling back at home and we hope to see him again very soon."

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