health and fitness: ‘I was cross that my child had to beg the prime minister for a drug’

vendredi 31 juillet 2015

‘I was cross that my child had to beg the prime minister for a drug’

Sue Barnley’s son has a rare fatal disease. Her family is having an increasingly bitter fight to get funding for his treatment

In the photograph that has pride of place in the living room of Sue Barnley’s home, her son Harry is standing, all blond curls and cheeky grin, dressed as Woody from Toy Story. His brother Jack, two years older, is beside him, channelling Buzz Lightyear. For Sue, 45, the four-year-old picture belongs to that innocent time before Harry, now nearly seven, was diagnosed with Duchenne muscular dystrophy, a rare muscle-wasting disease that mostly affects boys. Now she and her husband, Tom, 39, live with the knowledge that Harry will be in a wheelchair before he is 12 and will probably die in his 20s.

“When we finally got the diagnosis in July 2013, it was hideous,” says Sue, a former sales manager from Farnham, Surrey. “We were in grief for the life Harry would not have and the hard path he would take. The doctors told us, ‘Duchenne is 100% fatal so you need to go away and enjoy your little boy and give him a good life.’ We were told not to pin any hopes on research.”