A parent’s love knows no bounds, especially when a child is diagnosed with a deadly disease. But what lengths would you go to if the disease was so rare that pharmaceutical companies saw no profit in developing a cure? Well, more and more parents of desperately sick kids are taking matters into their own hands. Armed with passion and the power of the internet, they’re bringing urgency to the usually glacial pace of drug discovery. Michael Usher talks to one Australian couple whose son and daughter have developed an ultra-rare fatal genetic disease. They’ve found a cure and established a medical trial, only to face the impossible decision – which child will they save?
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