As it did with this family from Victoria, Australia.
I have the link here, if you want to listen to the interview.
Otherwise, the transcript appears below.
www.abc.net.au/am/content/2009/s2733677.htmThursday, November 5, 2009 08:00:00
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TONY EASTLEY: The determination of a dying baby's family, her friends and doctor in Melbourne has led to the treatment of a rare metabolic disease that kills about 100 babies around the world each year.
There were hurdles along the way that almost meant the treatment came too late for the Melbourne girl.
Samantha Donovan reports that a German plant biologist's research helped spark the long journey towards finding a treatment that will provide hope and a wonderful Christmas present for some families around the world.
SAMANTHA DONOVAN: Molybdenum cofactor deficiency type A is a metabolic disorder that stops the body from expelling sulphite. About 100 babies are born with it around the world each year.
They suffer seizures and progressive brain damage until they die, usually in early infancy. Until the case of Baby Z in Melbourne, there's been no known treatment.
Dr Alex Veldman is a neo-natal specialist at the Monash Medical Centre.
ALEX VELDMAN: We had to tell the parents that there is no treatment available and that the child will die in the next couple of months, but for sure in infancy.
SAMANTHA DONOVAN: But the parents of Baby Z and their friends refused to accept that the situation was hopeless and began reading all the relevant medical literature. One of them discovered that a plant biologist in Germany had come up with a compound that he thought could treat the disorder but had only tested it on mice.
Dr Alex Veldman.
ALEX VELDMAN: I was excited but still this was an animal experiment, this substance was never ever given to a human and it was years away from being a medication. How should we just take it from the bench to the bedside in a brief period of time?
SAMANTHA DONOVAN: The German plant biologist, Professor Gunter Schwarz, couriered all the compound he had to Melbourne in the hope it could save Baby Z. But Dr Veldman and his colleagues first had to clear the experimental therapy with the Monash Medical Centre's bio-ethics board.
Then, as Baby Z's condition worsened by the hour, the hospital raised another legal hurdle.
ALEX VELDMAN: Chief legal officer of Southern Health said to me "Alex, we need to know if the Australian public agrees that this experimental approach is in the genuine interest of this baby and the only person who can tell us that is the court, so we need to have a court order".
