Jean-Christophe Novelli says 'it's easier to get a Michelin star than a blue badge'

The chef-restaurateur Jean-Christophe Novelli and his wife Michelle came agonisingly close to losing their six-year-old son Valentino last summer - five years after the youngster survived a rare form of cancer. But the circumstances were, if anything, even more random and alarming for the couple.

"He tried to jump out the car window while I was driving at 40mph," says Michelle, with admirable frankness. Her anguished face, however, reveals the lasting emotional impact of the incident.

On the hot day in question, Michelle had Valentino and his older brother, Jacques, then ten, in her car. Suddenly, Michelle heard a thump. Valentino, who had managed to wind down the window, had thrown the iPad he was playing on through it.

In the next instance, the little boy had wriggled free of his seatbelt and launched his body headfirst out of the car in pursuit of his tablet. For a second, time seemed to stand still.

"Luckily, Jacques caught him by his legs," recalls Michelle today. "And if it wasn't for my middle son, I probably would have ended up crashing as I would have hit the brakes."

It was a nightmare no parent should ever face. But the circumstances become clearer when Michelle explains that her fun-loving, boisterous youngest son has a condition called 15q13.3 Microdeletion Syndrome, a rare genetic disorder.

It means some of Valentino's chromosome 15 is missing. Affecting an estimated 10,000 people in the UK, the condition can cause developmental disturbances in some individuals that become more apparent with age.

Now nearly eight, Valentino has profound autism, the severest kind. He also has learning difficulties and ADHD. Doctors discovered the chromosome anomaly after he was diagnosed with stage-four neuroblastoma, a rare and aggressive form of child cancer, when he was six weeks old. He had two years of intensive chemotherapy that left him scared and in pain.

A year after receiving his all-clear from cancer, Valentino was diagnosed with autism. Today, he can't form words or grasp language.

He remains in nappies and requires round-the-clock care and help with everything, from eating to brushing his teeth.

"He has the mental age of a one-and-a-half to two-year-old," explains Jean-Christophe who, like Michelle, dotes on their little boy. He can't learn certain things we all take for granted. He has no sense of danger and will run away because he thinks it's a game and he likes that running feeling."

On one occasion when Jean-Christophe took his youngest boy swimming, Valentino jumped out of the pool and ran past the changing rooms into the reception.

Making it through the main doors, he kept running for almost half a mile in his swimming trunks.

"I was behind him screaming and trying to catch him in my own wet swimming trunks," Jean-Christophe recalls.

Having already battled so much pain and heartache, the couple know Valentino cannot lead the same life as Jacques, 11, and their eldest son, Jean, 15. They've been coming to terms with this for some time.

The huge changes have also been very difficult for Valentino's brothers, who were extremely traumatised by his early ordeal. They are young carers and have had to adjust to the family's permanent need to circulate around Valentino.

"They don't do anywhere near the level of things that we used to do when I just had them," admits Jean-Christophe.

"But despite their chaotic circumstances, the boys still manage to do well for themselves and we are very proud of them.

"To the four of us, Valentino will always be our ultimate prime priority, even though sometimes that means we can be extremely busy."

But their youngest boy's growing strength and size increasingly adds a new level of complication to his care, as Michelle realised when she witnessed his attempted jump through the car window.

"I honestly thought the danger might click for him at some point, but it hasn't and it won't," she says. "You have a high level of anxiety all the time, like you're on red alert.

"You're trying to keep him happy and use up some of his physical energy so he doesn't have meltdowns."

Jean-Christophe adds: "He's quite hard to control when he has one. He doesn't mean it but he will pull your hair."

Valentino attends a specialist school five days a week near the Novelli family home, a farmhouse in Hertfordshire. Michelle and Jean-Christophe also benefit greatly from the support of charity Unique, which helps families affected by rare chromosome disorders. The organisation provides loved ones with information and opportunities to meet other affected members of the community.

It recently released a pop song, Touch the Sky, to spread awareness of its cause. And for the Novellis, like many others, it has been a lifeline.

Unique has also provided information about the traits Valentino might develop in the future.

Research into children with a 15q13.3 microdeletion has found they are at higher risk of developing schizophrenia than the general population.

"We're not sure what that looks like in a non-verbal person, but it's where Unique can help us," says Michelle. "We'll be able to reach out to other parents whose children have developed it and learn how they found signs to indicate that their child was suffering from this mental illness."

Having a rough understanding of the conditions Valentino might develop is more reassuring to the couple than agonising over aspects of his behaviour. Valentino loves to jump into shadows, for instance, and likes to see inside televisions and mirrors. "There are all these abstract things he sees that we can't," says Michelle.

Having so much heartache, know can't lead life as brothers'

She admits she is the greater worrier of the two. When Valentino received his genetic disorder diagnosis, she and Jean-Christophe were devastated.

"He was already fighting for his life and then we had news that, even if he did make it, he'd have this life sentence hanging over him and might be locked up in his own little head forever," she says.

After Valentino missed key milestones, she became depressed."I didn't want that for my child and I was very angry and upset about it - scared, very fearful for the future," she admits.

"What Jean-Christophe and I do is a very two-man job. What if something happens to us? What happens when we're elderly? There are so many questions and fraught situations."

Michelin award-winning chef Jean-Christophe has admitted losing work, mainly in the past, to put his son's care first. He was recently a judge on MasterChefAustralia and runs a cookery school, assisted by Michelle, from their home.

Gone are the days when he worked insanely long hours in London kitchens. Now, he devotes as much time as possible to his young family - he also has an older daughter, talented DJ Christina Novelli, 37, by a previous relationship - and has, against all the odds, taught Valentino to swim. "We were fortunate to realise that he was obsessed with water at an early age," says Jean-Christophe.

"It's been essential to find him an environment where he can progress, become more expressive, and, importantly, where we can try to understand him."

The chef has always turned heads with his dark mane and Gallic good looks, but sadly some stares and silly remarks now come from bystanders who don't understand Valentino's outbursts.

"We try to ignore it - however, some people aren't very discreet," says Michelle. "That's why we ask people not to judge but to simply try to understand."

It's evident how much both parents adore their gregarious youngest son, who loves music and dancing.

"He's a very sweet, loving little boy, very special," says Jean-Christophe. "He puts a magic spell on you. He makes you want to slow down with him and see the world how he does."

Michelle nods in agreement. "There are aspects of his autism that are quite beautiful to watch - seeing how his mind works and how he relates to certain things," she says.

"He's got this wonderful innocence about him. He doesn't understand the concept of hide and seek so when it's his turn to hide, he'll just close his eyes really tightly and you have to pretend to find him."

These moments of tranquillity are important because the responsibilities of caring for a son with complex disabilities are unrelenting.

Jean-Christophe and Michelle have been trying to get a blue badge for three years. They are now looking to appeal their latest rejection, using a letter from Valentino's school headmistress to prove how he meets "every single bit of criteria".

"It is frustrating because it feels almost like a lucky dip - anyone would have more chance of winning a Michelin star than getting a blue badge," says Jean-Christophe. "People who meet our son are absolutely shocked he hasn't got one." Their youngest also only sleeps until 3am or 4am.

Upon waking, he jumps up and down on his bed. Fearing for his safety, Jean-Christophe and Michelle have moved him into their bed and are consequently even more sleep-deprived themselves.

All the while, the list of adaptations for their home grows ever bigger and more costly. The couple share this information only because they understand how many other families are struggling in silence.

They have seen several nannies and babysitters, "but we can see in their eyes that they can't take this job on," says Michelle.

"We are trying hard to find someone but the problem is that Valentino is out of people's expectations - he is a lovely boy but his care is a big task."

She speaks with a nervousness, aware that many people these days describe their autism a "superpower". Two in three people with autism don't have a learning disability.

"I'm glad for them but I don't feel like my son's autism is a superpower," she admits.

For this reason, the Novellis want to see the new Labour government prioritise support for families with severe disabilities. They've personally experienced the chipping away of services and changing conditions placed on the help they're offered.

"It's important," says Michelle, "because it kills you. Caring is one of the hardest things and I know so many people who are carers and it breaks them eventually. It's all-consuming, it can make you ill."

She adds: "The only thing that allows you to deal with all of this is the fact that you love them, you absolutely love them to bits. And that can cause pain because you worry about them so much.

"The complete change in your life, all the responsibilities that come with that, and which take over your day from the moment you wake up to when you shut your eyes at night - love is what gets you through it."

At this point, Jean-Christophe breaks into a big smile. "And Valentino may not speak but he gives the best cuddles in the world."

To learn more about the work of Unique, visit rarechromo.org