SIX-year-old Sam Brown has taken his fight for treatment funding to the very heart of power.

The Otley boy, one of only 78 people in the country with the life-limiting Morquio Syndrome, is waiting anxiously to see if NHS England will pay for the drug treatment he needs.

Sam, accompanied by mum and dad Simon and Katy and MP Greg Mulholland (Lib Dem, Leeds North West), travelled to Westminster yesterday to deliver a message directly to David Cameron.

Armed with a huge Keep Sam Smiling banner created by his schoolmates at The Whartons Primary, he started the day by greeting MPs as they arrived at the Houses of Parliament.

Then in the afternoon he visited No 10 Downing Street to hand over his own letter, along with others and messages and pictures of support from his friends, to the Prime Minister.

Sam and other children with Morquio Syndrome, which severely inhibits growth, have been helped in recent years by a clinical trial of the drug Vimizim. But NHS England are yet to make a decision on whether or not they will fund the treatment, leaving the affected families in limbo.