Jude Keil used to enjoy swimming, cycling and snorkelling
Jude Keil was a happy, healthy nine-year-old who loved swimming and cycling and would snorkel for hours chasing fish in the sea. Yet in just a few months he became so ill that he went into respiratory arrest, then fell into a coma.
He was to spend 300 days in hospital while medical teams “turned over every stone” to help him. Two years on Jude is still unable to breathe on his own and cannot walk or talk. But his parents Peter and Emma say he “doesn’t just exist but lives” thanks to the support of their local children’s hospice.
The family, from Sittingbourne, Kent, first noticed something was wrong while they were on holiday in September 2022. “Jude was an excellent swimmer, a fantastic cyclist,” dad Peter says. “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.
“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.”
The family returned home and Peter and Emma sought medical advice. Blood tests, specialist appointments and monitoring followed. In February 2023, Jude was admitted for observation after further tests. That night, he struggled to sleep.
“He was struggling with oxygen levels,” Peter says. “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 next morning Jude phoned home and spoke to his mum. His parents didn’t know that this would be the last time they heard 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 was not simply tired but going into respiratory arrest – a life-threatening emergency in which breathing becomes inadequate and oxygen levels plunge. “He was almost suffocating in his own body because he didn’t have the strength to breathe out the carbon dioxide,” Peter says.
Jude fell into a coma and was intubated, waking a week later on his 10th birthday. He has relied on a ventilator ever since.
He was to spend 300 days in hospital and was finally diagnosed with an unknown form of motor polyneuropathy, a general term used to describe diseases which affect the nervous system. His family, including little sister Elodie, now four, were able to bring him home a week before Christmas 2023.
For a long time the world felt unbearably dark – but slowly the family rebuilt their lives. With the help of local children’s hospice Demelza, Peter and Emma are learning to navigate the demands of round-the-clock care while giving Jude, now 12, as normal and fulfilling 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, and it brings him immense comfort. The last time he was in the water, Peter said his son was so soothed he began to “nod off”, adding, “he was so, so relaxed in such a happy place.”
Jude’s lungs are now healthy, although he does not have the strength to breathe independently. While he has lost full muscle control, his cognitive function is unchanged.
He has made remarkable progress with schoolwork and communicates using a specialist eye-tracking device with coded systems. Recently, he regained a small amount of tongue movement, a development that has brought the family fresh 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 hope that his story encourages other families of children with complex needs to embrace life beyond their front door. “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 launched its Bring Sunshine Christmas Appeal and aims to raise £73,000 to support children with serious or life-limiting 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.”
Find out more at https://www.demelza.org.uk/get-involved/bring-sunshine-christmas-appeal/ and there is also a GoFundMe page to support Jude and his family.