Kicking up leaves on the magic carpet and bursting balloons on a screen, Valentino Novelli is running around in his own mini indoor theme park, before taking a moment to chill out surrounded by projections of jungle animals in the sensory tent.
It's as much of a treat for his famous dad, Michelin-starred chef Jean-Christophe Novelli, as it is for the eight-year-old, who is happily trying out the new interactive technology in the play area of Keech Hospice in Luton says "To see him so happy and engaged, you have no idea how happy it makes me," Jean-Christophe. "Valentino's favourite cartoons are animal animations, like Peppa Pig, so being surrounded by them as part of the jungle theme is fascinating for him."
As well as Valentino, Jean-Christophe, 63, has two other children - Jean, 16, and Jacques, 12 with his wife, Michelle, 48, as well as a daughter Christina, 37, from a previous marriage.
When Valentino was diagnosed with stage four neuroblastoma, a rare childhood cancer, at just six-weeks-old, his parents were told he might never see his first birthday. Then Michelle developed a blood clot from keeping a bedside vigil, as Valentino was given a 20% chance of survival.
Amazingly, both recovered. But the joy of Valentino's remission was short-lived, as his parents 5 discovered he had a rare genetic disorder, 15q13.3 chromosome microdeletion syndrome, which affects 10,000 people in the UK. It causes developmental disturbances in some people that become more apparent with age. It means Valentino has autism and is non-verbal. He is still in nappies and requires round-the-clock care..
"Valentino didn't start speaking when he was meant to," says Michelle. "It is heartbreaking to know we will never hear our son say, 'Mum and Dad, I love you' - simple words that mean so much." "But what matters is he is still here," says Jean-Christophe.
This story is from the November 18, 2024 edition of New UK.
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This story is from the November 18, 2024 edition of New UK.
Start your 7-day Magzter GOLD free trial to access thousands of curated premium stories, and 9,000+ magazines and newspapers.
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