Duchenne Muscular Dystrophy: 'Fatal' risk of doing nothing
6 May 2013 Last updated at 10:58 BST
The parents of five-year-old Jack Johnson, who suffers from a rare disease, say there is an urgent need for experimental treatments to be made available for patients like their son.
Jack has Duchenne muscular dystrophy (DMD) and Sir Bradley Wiggins, together with charities and MPs have written to a Sunday newspaper calling for change.
Jack's parents Andy and Alex have set up a charity, Joining Jack, to find a cure for DMD and discussed its work with the BBC's Roger Johnson and Sian Lloyd.