British firm won't sell us drug that could save our dying 8-year-old

The parents of a dying eight-year-old girl have criticised a British pharmaceutical firm for refusing to supply her with a drug to combat her rare condition - after they raised almost £1million to buy it.

Sandra Massart is one of only 2,000 sufferers worldwide of the deadly neurological disease metachromatic leukodystrophy. Her parents William, 48, and Olga, 39, say she will be in a vegetative state within months unless she is given an expensive experimental drug which is still being tested.

They claim that a leading British bio-pharmaceutical firm, Shire, is denying them the therapy, and have flown to London to stage a protest.

The drug Metazym is the only therapy which offers any hope for Sandra. Without it, doctors say she will go deaf and lapse into a vegetative state within months and die within a few years.

The Massarts claim Shire promised to sell it to them if they could raise the money. Treatment costs around £44,000 per month and has to be administered intravenously every fortnight for two years.

The couple raised one million euros (£860,000) in just two weeks amid an outpouring of public sympathy in Belgium, with the country's royal family backing their campaign. But they were told the company could not produce enough of the drug and needed their entire stock for clinical trials, which Sandra is unsuitable for, on nine children.

Mr Massart plans to march from the Royal Courts of Justice to the company's headquarters in Basingstoke this week. He will set off today carrying a picture of his daughter and plans to dump one million fake euro notes outside Shire's offices.

Mr Massart, an engineer, said: "At no point was any possible shortage or production problem mentioned. I was never told they only had enough of the drug for nine children in the whole world. They are morally responsible for the promises made by the company they bought the drug from.

"I will never give up fighting for her but my wife and I are having to watch our child dying in front of our eyes. It is the most horrible thing you can imagine."

Metachromatic leukodystrophy is a rare disease in which the lack of a key enzyme causes loss of the protective sheath from the brain. Symptoms include muscle wasting and rigidity, developmental delays, convulsions, paralysis, and dementia. Mr Massart said he was surprised and heartened by the public response in Belgium, but was now being accused of being a crook in his homeland, because he has not bought the drug.

A Shire spokeswoman said the "open-ended" clinical trials began for the nine children in February last year. She admitted the parents of one of the children are paying for their therapy and that further trials for young children will take place later this year.

She said: "We fully understand the seriousness of Mr Massart's situation.But it is a very long, complex process creating the replacement enzyme and our manufacturer is unable to make more than for the nine children currently on the trials. We are looking at all manufacturing possibilities, including bringing it in-house. But that would take two to three years. We are not refusing to sell Mr Massart the drug. We just do not have enough of it."