FOR the past two years, he has been forced to watch on helplessly as his young daughter battles against a rare and deadly disease.

Determined not to see his eight-year-old slowly slip away into a vegetative coma, William Massart has made one last-ditch attempt to save his daughter Sandra.

The 48-year-old, from Temse in northern Belgium, arrived in Basingstoke to take his fight to the doorstep of pharmaceutical company Shire to plead for the only known treatment that could save Sandra’s life.

Just two years ago Sandra was diagnosed with Metachromatic Leukodystrophy, a rare neurological disease that affects only 2,000 people worldwide.

She has become 80 per cent paralysed, lost her ability to speak and her sight. Soon she will go deaf and become more and more withdrawn, trapped inside her own body, before slipping into a coma.

Her family claimed they were promised the drug 18 months ago by small Danish company Zymenex if they raised one million Euros.

But by the time they raised the cash – with help from the Belgian Royal Family – the drug, Metazym, had been sold to Shire, who said Sandra could not be given the treatment because all the stock was needed for further trials.

So, on Monday, Mr Massart, set off on a march from the Royal Courts of Justice in London, to Shire’s Basingstoke headquarters, where he met with his wife Olga and their daughter, in the hope of pressurising the drug giant into handing over the medication.

The engineer said: “Every day I have to watch my daughter getting weaker and all the while there is a drug out there that could help her.”

But he was “devastated” after he failed to sway Shire.

He said: “I was hoping that if I came here in person I could change their minds, but it has been a real blow.”

Jessica Mann, senior vice president of global corporate communications at Shire, said the question of supplying the drugs had nothing to do with money and was simply a case of an inability to produce larger amounts.

She said: “The treatment is still in an experimental stage and everybody involved in its development are working their souls out to ensure it is safe and effective through these trials so we can provide this drug to all the Sandras in the world.

“We have never promised Mr Massart that we would provide his daughter with the treatment and there is no record that Zymenex did.”