Galloway and West Dumfries MSP Alex Fergusson has backed a petition by pupils at Stranraer Academy calling for a medicine to become available on the NHS.
Pupil Kyle Pirrie is campaigning for the availablility of Vimizin to help his friend and fellow pupil Katie who lives with Morquio A syndrome for which there is no known cure, but which can helped with Vimizin.
Mr Fergusson visited the pupils last Friday, ahead of a decision due to be taken by the NHS on the future of the drug.
He said: “This medicine has been available free of charge for five or six years thanks to its manufacturer, but a decision is to be taken next month as to whether or not it will be freely available through the NHS.
“This is not a cheap medication but, as Katie herself asked me, how do you put a value on a human life?
“There are only just over a hundred sufferers throughout the UK, with just five in Scotland, and those who have had treatment with Vimizin report a massive reduction in pain and the other symptoms of this syndrome.
“Life expectancy, which rarely exceeds the mid 20s without treatment, can be considerably extended with this treatment, and it is enormously to the credit of Katie and her friends that they have raised this petition to try to ensure that the treatment is available to all.
“I am proud to support their campaign, and wish them every success in what they seek to achieve.”
Morquio syndrome is an inherited disease of metabolism in which the body is missing or doesn’t have enough of a substance needed to break down long chains of sugar molecules called glycosaminoglycans.