Mark Creswick with his son Harley
Media playback is unsupported on your device
Video

Father asks 'how much is a child's life worth?'

Parents of children with life shortening conditions fear that new treatments will not be available because of the cost, it is claimed.

Mark Creswick told the BBC of the impact Duchenne muscular dystrophy (DMD) was having on his son Harley.

DMD is a rare form of the disease that affects around one in 3,600 boys.

Harley's father is calling on the government to make life-saving drugs, that treat DMD available on the NHS. He wants the "red tape" around the licensing of the drugs removed.

  • 03 Sep 2013
Go to next video: Fears over funding for rare diseases