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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For information and support on Sanfilippo Syndrome in Australia contact the Sanfilippo Children’s Foundation: http://www.sanfilippo.org.au/ or https://www.facebook.com/Sanfilippoch…
Donations toward the foundation can be made at: http://www.sanfilippo.org.au/donate.html