Jardine how their tragedy grew into a charity helping some of the UK's 59,000 epileptic children
Daisy Garland was 18 months old when her mother, Sara, started her on a strange new diet.
The first meal consisted of mackerel in olive oil, a little kiwi fruit and goat's cream mixed with water and vegetable oil. " 'This is awful,' I thought as I gave it to her," says Sara.
Three times a day, Daisy ate meals that would make even Atkins dieters feel queasy: omelettes with extra mayonnaise, lots of salmon and avocado, fatty frankfurters, cream, butter and olive oil galore, but very little carbohydrate and protein.
The diet was so precise that even her toothpaste and sunscreen were sugar-free.
"It was half scary, half exciting," says Sara, 43, who remembers vividly those early days when she would spend six hours calculating menus and weighing everything to the nearest gram.
It was worth it. Within a week of starting the diet, she and her husband David noticed a change in Daisy, who suffered from epilepsy: "It felt like a veil was lifting. Previously she had had as many as 100 seizures, day and night, but her fits became fewer, shorter and less violent."
The seizures had begun in October 1998 when Daisy was five months old, a couple of days after her second polio, diptheria and tetanus vaccination.
Indeed a study published last year in Australia on vaccine links to Daisy's form of epilepsy - severe myoclonic epilepsy in infancy - has found an underlying genetic cause, with the first seizure possibly triggered by the rise in temperature following vaccination.
Most of Daisy's seizures involved jerky movements, but she had many sorts: screaming seizures, tongue-biting incidents and others where she would stare into space.
"They would come out of the blue - just when you were ready to go out," her mother remembers.
"You never knew what state she would be in afterwards. Sometimes she was fine, but after longer ones - her longest was six and a half hours - she had headaches and had to rest. Epilepsy was stealing her childhood; it left her little time to play or learn, and each seizure may have inflicted some brain damage."
Penny Fallon, consultant paediatric neurologist at St George's Hospital, South London, tried various anti-convulsant medications and a steroid on Daisy.
The drugs only made her worse. "She was like a little zombie: drowsy and with little appetite. She also became aggressive and would stare into space and dribble," says Sara.
It was then she decided to try the ketonic diet she had heard about.
Source - Telegraph