Dad's campaign to save daughter's life

William Massart, from Temse in northern Belgium, is marching to the headquarters of pharmaceutical-company Shire, which he says is denying his eight-year-old daughter Sandra the life-saving treatment, despite raising one million Euros.

Two years ago Sandra was diagnosed with Metachromatic Leukodstrophy, a rare and deadly neurological disease.

Mr Massart, 48, is expected to arrive at the Basingstoke-based company later this week, where he will meet Sandra and her mum Olga, 39, in a last-ditch attempt to pressure drug giant to hand over the Metazym, which is believed to be the only treatment for this rare condition.

He said: "I don't want to be a troublemaker, or a hero. Every day I have to watch my daughter getting weaker and all the while there is a drug out there that could help her."

Mr Massart set off from the Royal Courts of Justice in London this morning and hopes to gain support from the British public.

The family claims they were promised the drug 18 months ago by a small Danish company if they raised one million Euros.

After a national fundraising campaign, supporting by the Belgium royal family, the family raised the cash but by then the drug had been sold to Shire plc.

Shire said they are unable to supply the drugs claiming that it needed the whole stock for further trials.

A Shire spokeswoman is reported to have said that they began trials for nine children in February last year and that further trials would take place later this year.

She added: "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."