Myles Hobson is living, breathing proof, of the benefits of Kalydeco, the 'wonder drug' which is giving real hope to Cystic Fibrosis sufferers. More than a million people in Australia carry the CF gene and a child is born with the disease every four days. It is the most common, life-shortening genetic illness. There is no cure. When he began the trial at the Children's Hospital Westmead in Sydney's west, Myles Hobson, 12, was in serious physical trouble - his lung function had dropped in the 40 per cent range. Myles Hobson performs a lung function test at the Children's Hospital Westmead. His mother Karen insists he has improved dramatically in just two months on the revolutionary drug Kalydeco (Ivafactor)
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Kalydeco (Ivacaftor) is a revolutionary blue pill developed in the US and now approved for Australia's Pharmaceuticals Benefits Scheme (PBS)
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CF sufferers take it twice a day, it has been shown to improve lung function and help patients gain weight
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Myles Hobson, 12, was a last-minute inclusion in a trial being undertaken in at the Children's Hospital, Westmead
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His lung function has almost doubled since he began taking the medication just two months ago
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Their mother admits she 'fell apart' when told both her children had CF after watching a close friend die form the disease a few years before
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Currently the drug can only help those with a G551D mutation of Cystic Fibrosis, work continues on a version for the most common Delta F508
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More than a million Australians have the Cystic Fibrosis gene and most don't know it
Regular visits to the @placeholder clinic in hospital are required to keep Myles and other CF patients well enough to do the simple things like attend school
Kalydeco (or Ivacaftor) is a pill taken twice a day for the treatment of CF in those aged six or older and who have the @placeholder mutation.