Chrissy and Amanda Grube
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Sick children lose lifeline as NIH closes due to US shutdown

As the row over the debt ceiling continues, large parts of the US government remain shut. Experts say the economic toll is so far small - but for some it's a matter of life and death.

Eight-year-old Chrissy Grube, and her younger sister Amanda, have Giant Axonal Neuropathy (GAN), a rare and incurable degenerative disease. An experimental gene therapy project could be the first treatment to stop the progression of the disease, and it is Chrissy's only shot at survival.

The National Institutes of Health conduct thousands of clinical trials every year to find treatments and cures for diseases. Unfortunately, many of its employees are being told to stay at home and valuable research - including the trial which could help the girls from Maryland - has been halted.

The BBC's Jane O'Brien reports.

Produced by Charly Jaffe, filmed by Peter Murtaugh and edited by Bill McKenna

  • 14 Oct 2013