A remarkable boy from Walney Island is now home with his family after defying doctors' odds once again.

Ten-year-old Jasper Holt was born in April 2013 and left medical professionals baffled with a condition so unique they dubbed it ‘Jasper’s Syndrome’.

He was born with a cleft palate, conjoined kidneys, a small jaw and was believed to have grey matter heterotopia - a neurological disorder caused by clumps of grey matter being located in the wrong part of the brain.

The Mail: FIGHTER Baby Jasper Holt in the Special Care Baby Unit in the Royal Victoria Infirmary, pictured with mum Gemma Moorby Emily Barber/Newcastle Chronicle

He was also diagnosed with mitochondrial disease, a condition where cells in his body are unable to produce the energy they need to function. 

Jasper requires 24/7 care and is on a ventilator at night time. His parents have been unable to work for ten years due to being his carers.

The ten-year-old had gone four years without needing to be hospitalised, including when he contracted Covid-19 during the pandemic. Jasper went into Liverpool's Alder Hey hospital for planned surgery on July 6 however and things took a turn for the worst.

The Mail: Jasper having cuddles with his two friends

His mum Gemma Holt said: "It was only meant to be a few days which turned into eight weeks and his surgery lasted a massive seven hours.

"He was very, very poorly and had to be taken to ICU. He required IV fluids for four weeks as part of his bowel failed due to getting no blood supply.

"We were told that his bowel might actually have to be taken outside of his body in order to heal - that's what we were prepared to see. We weren't told that it could heal inside, thankfully, that's what began to happen however.

"He also had four blood transfusions and numerous IV antibiotics due to infections. A CT scan also showed he had a build-up of fluid on his lungs so he needed a chest drain.

"On August 9 we nearly lost him as he had a respiratory arrest. We were very worried after a few days of being told to prepare for the worst."

The Mail: Dad Jeff took Jasper for a walk down the prom first day being him back on Walney island

Jasper's dad Jeff had been separated from the family to be by Jasper's side. He was on his own when he was given what he thought was terminal news and Gemma had to stay to look after his siblings, Eleanor, three, and Oscar 11.

Gemma added: "We all just wanted to be there with him. We are so proud of Jeff, he's been by Jasper's side throughout this traumatic time. He's helped him through his ups and downs. He's an amazing dad, I really couldn’t do this without him, he’s so beautifully selfless."

Jasper battled through and came home on Friday (August 18). He has been bed-bound for several weeks however and needed to learn to walk again. He's not quite himself yet however Gemma wants everyone to know the wonderful news that he's home again.

The mum-of-three added: "Our brave warrior defied the odds again. He's had to overcome so much with all the pain and suffering he’s experienced.

The Mail: Dad Jeff having cuddles with Japser on the couch at home

"I don't know how he does it but we're so proud of him. He's non-verbal but I could see the delight in his face when he woke up in his own bed.

"Oscar has missed his little brother so much and Eleanor has missed her little sidekick. Please continue to beep if you see us on the prom. We were so excited to welcome him home."

Mitochondrial disease is very rare genetic abnormality. There’s only a handful of people with this specific alteration. Jasper's parents are having a meeting in September with genetic specialists about his diagnosis.