A LITTLE boy with a rare life-limiting illness is the only one in the UK to be part of a new medical trial.
It is hoped the enzyme replacement therapy being conducted at Great Ormond Street Hospital, in London, will prolong Stanley Barnes' life.
He was diagnosed with the debilitating Sanfilippo type A four months ago, aged 17 months.
It affects only 40 children in the UK.
His body lacks an enzyme which would 'clean' the cells of sugars that build up within them so brain and central nervous system cells die.
It will lead to a loss of ability to do many tasks, a period of hyperactivity and then a loss of speech, ability to walk and recognition of anyone around him.
On Tuesday he underwent surgery to be fitted with a 'port' in his spine which will be used to give injections of the enzyme every two weeks. His father Ross, a teacher at St Francis School, in Falmouth, said: "We are very pleased that he passed the rigorous medical and cognitive ability tests.
"He was then randomised to a trial group that receives the most amount of the enzyme."
As the disease is so rare the trial takes place as children are diagnosed and if they pass the tests it means there is no actual group having the test at the same time, but instead the test will be done over time and worldwide.
"As this is a trial and the enzyme is not expected to be as effective as if his body had produced it itself and the fact there is no cure for Sanfilippo, then we know this will not save him," he added.
"However, if it works better than his cells currently do, we may be given more time with him.
"This is the best that we could find for Stanley right now and we felt we should act as quickly as possible to get him involved, this is not a disease that allows us time to wait around as deterioration is so rapid."
Stanley's Friends has been set up to raise money for things Stanley may need, such as an outdoor wheelchair lift and sensory garden and playroom.
On Friday night a dinner dance at the Greenbank Hotel raised more than £2,200 and with hotel sponsorship and Santander match funding the total is more than £4,000.
The event sold out within two hours of tickets going on sale.
And children and staff at St Francis School donned wild outfits for the day in return for a donation.
Some of the pupils designed a Where The Wild Things Are themed playroom for Stanley at his Mawnan Smith home.
Mr Ross said: "It's amazing what a great community we live in, a community that will really make a difference to Stanley's future."