Jude Keil was a healthy and happy nine-year-old lad who loved swimming, cycling and snorkelling in the sea. But he fell into a coma after going into respiratory arrest. The young lad from Sittingbourne, Kent, spent 300 days in hospital as medical teams tirelessly "turned over every stone" to help him.

Two years on, Jude is still unable to breathe independently and can't walk or talk. However, his parents Peter and Emma insist that he "doesn't just exist but lives" due to the support of their local children's hospice.

The family first noticed something was amiss during their holiday in September 2022. "Jude was an excellent swimmer, a fantastic cyclist," his dad Peter recalls. "He was regularly out and about on his bike, 10 miles at a time. He'd snorkel in the sea for hours on end from the age of six.

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"He actually choked while was having lunch on holiday. It was completely out of the blue. And from then onwards, he really wanted to be in the water, but was struggling to swim."

Upon returning home, Peter and Emma sought medical advice. Blood tests, specialist appointments and monitoring ensued. In February 2023, Jude was admitted for observation following further tests. That night, he struggled to sleep.

"He was struggling with oxygen levels," Peter explains. "He had very low saturation levels when he was taken into the ward, which kind of baffled a few of the nurses that they were quite low. The following morning, Jude rang home and spoke to his mum. His parents had no idea this would be the final time they would hear his voice.

"He asked me to have a sleep, so I said to him, 'Yeah, of course you can. You've worked really hard overnight. You get your head down and get some rest and we'll see how the day goes'," Peter says.

Tragically, Jude wasn't merely exhausted but entering respiratory arrest – a life-threatening emergency where breathing becomes insufficient and oxygen levels drop dramatically.

"He was almost suffocating in his own body because he didn't have the strength to breathe out the carbon dioxide," Peter says.

Jude slipped into a coma and required intubation, regaining consciousness a week later on his 10th birthday. He has depended on a ventilator ever since.

He spent 300 days in hospital before finally receiving a diagnosis of an unknown form of motor polyneuropathy, a general term describing diseases affecting the nervous system. His family, including younger sister Elodie, now four, were able to bring him home a week before Christmas 2023.

For a considerable time, the world felt overwhelmingly bleak - but gradually the family pieced their lives back together. With support from local children's hospice Demelza, Peter and Emma are learning to manage the demands of constant care whilst giving Jude, now 12, as normal and enriching a childhood as possible.

"For almost a decade, our lives were full of sunshine. We spent time camping, swimming and cycling, just enjoying being together," Peter says. "When Jude's little sister Elodie came along, our family felt complete. Demelza has given us the confidence to be more like the family we were before.

"We've been to theme parks, stayed in hotels, been to Silverstone as Jude loves F1, and we've even been camping again. The most important thing for us is that Jude doesn't just exist, he lives and the support from Demelza enables that."

Jude loves spending time in the hydrotherapy pool at Demelza's Bobbing hospice, which brings him tremendous comfort. During his last visit to the pool, Peter said his son became so relaxed he started to "nod off", adding, "he was so, so relaxed in such a happy place".

While Jude's lungs are now healthy, he lacks the strength to breathe on his own. Although he has lost complete muscle control, his mental function remains unchanged.He has made extraordinary progress with his schoolwork and communicates using a specialist eye-tracking device with coded systems. Recently, he regained a small amount of tongue movement, a breakthrough that has given the family renewed hope.

"There's always hope still," Peter says. "We're looking at new ways of doing physiotherapy to see if we can stimulate muscles and nerves, etc."

Jude's parents are hoping that their son's story will inspire other families with children who have complex needs to venture beyond their homes.

"As a mum and dad, we're like to inspire other parents to not be fearful and to have the confidence to take their child with complex needs, or an adult with complex needs, out for a day or for an evening," Peter says. "It also gives the child confidence that their mum and dad or their carers have got the right tools and equipment in place so they can go out and enjoy themselves."

The hospice has kicked off its Bring Sunshine Christmas Appeal, aiming to raise £73,000 to assist children battling serious or life-threatening conditions.

Demelza's deputy chief executive Hayley Richardson said: "Life felt quite dark for Jude's family, but with Demelza's support, they are finding their sunshine again. Our Bring Sunshine Christmas Appeal is raising vital funds to help create unforgettable moments for families like Jude's. Every donation, no matter how small, has a big impact on the lives of the children and families we support and will help bring sunshine this Christmas."

For more information, visit https://www.demelza.org.uk/get-involved/bring-sunshine-christmas-appeal/. A GoFundMe page has also been set up to support Jude and his family.