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January 2011



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First Published Sunday, 10 May 2009

Exclusive by Nev Wilson


Chuckling as he raced around the wisteria with his watering can, four-year-old Hugo Lewis beamed with life.

As his proud parents looked on, their chirpy little lad proudly posed as his two brothers wondered what all the fuss was about.

Just six months ago he couldn’t read, could barely speak and was in a school for disabled children due to a condition causing brain tumours and epilepsy.

Suffering with Tuberous Sclerosis, little Hugo faced up to 40 fits a day, some serious enough to put him in hospital for a week.

His life-limiting condition, which could see tumours spreading from his brain to the rest of his body, means he is under regular medical watch.

But thanks to a ketogenic diet, high in fat, low in carbohydrates and with zero sugar, Hugo’s life has completely transformed.

His mother Esther, 38, of Alma Road, Reigate, said: “Hugo really is amazing when you think about how much he’s improved in just half a year.

“He has to go for scans at East Surrey Hospital every nine months to see if the tumours have grown or spread, or turned cancerous.

“But for the time being, he’s so much happier and livelier – really before we started him on it he was no more than a vegetable.”

His special diet, similar to the infamous Atkins diet, creates ketone bodies which have an anticonvulsant effect, which stop the seizures.

Esther said: “It isn’t much fun for him, he doesn’t really like the food, if I’m making mince, he has all the fat, or he’ll have lots of cream for pudding.

“But as parents we know it has helped him so much. His reading is still quite basic, but he’s getting there, and he just loves it.”

From the age of six months, Hugo suffered fits and seizures. An MRI scan led doctors to discover his brain riddled with terrifying lesions.

Esther said: “We used to sit him up in his chair, he would just suddenly slump down, we were obviously very worried about him.

“He would sometimes just go all distant and seem like he was somewhere else, other times he would collapse and violently shake in a full-blown fit.

“Seeing all the tumours in his brain on the scan was devastating, we just didn’t know what it would mean for his life.”

“We tried every single kind of drug out there, but he was completely doped up all the time, it was awful.

“As he grew older we worried about his education, he wasn’t able to even read six months ago, when he talked he was difficult to understand.”

Told by doctors the diet would be “too difficult” for them to handle, Esther and Stephen only started feeding Hugo on high fat foods in August 2007.

Through the Oxted-based charity, Mathews Friends, the couple met other parents with epileptic children who swore by the dietary regime.

Esther, a full-time mum with sons, Theo, 6, and Gus, 2, said: “The affects have been amazing, he started talking about a year ago, and then reading.”

Hugo was a former pupil at the Brooklands School, a learning place for children with complex needs, in Wray Park Road, Reigate.

But his reaction to the diet meant he was able start at Holmesdale School in Alma Road with an individual tutor at the beginning of the Easter term last month.

Stephen, 44, an IT project manager, said: “The condition affected the intricate activities, like holding a pencil, but he’s now almost writing his name.”

Despite his successes with his diet, Hugo may face difficulties growing older as his body produces hormones which could trigger the growth of tumours.

Stephen said: “As he approaches puberty we know we have to keep an eye on him. You never really stop worrying about him.

“But I’m so proud of him, to look at him, he’s like any other little boy his age.”

Facts on Tuberous Sclerosis

Tuberous Sclerosis is estimated to affect one in every 6,000 births in the UK each year.

Although genetic, more than 70 per cent of babies with the condition are born to families with no medical history and many parents are unaware they carry the disease.

Brain tumours caused by the condition can bear have mild affects on the child causing learning difficulties, epilepsy, behavioural problems and autism.

But tumours elsewhere in the body, like the eyes, heart, lungs and kidneys, can cause renal disease, heart problems and facial rashes.

Depending on the severity of the tumours, suffers of Tuberous Sclerosis can lead a normal life, but must remain under regular medical watch.

Ketogenic Diets

Ketogenic diets, high in fat, low in carbohydrates, with no sugar, are used to primarily help sufferers of epilepsy

The diet mimics aspects of starvation in the body, forcing it to burn fat rather than carbohydrate.

Normally, the carbohydrates in food are converted into glucose, which gets transported around the body and is important fuel for the brain.

But, with little carbohydrate in the diet, the liver converts fats into fatty acids and ketone bodies, which replace glucose as an energy source in the brain.

This creates a state called ketosis which has an anticonvulsant affect, stopping seizures and fits.

Source:   http://www.thisissurreytoday.co.uk/news/Reigate-boy-4-life-changing-diet/article-974826-detail/article.html

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