Shortly after their son Simon was born, Lyall and Gabrielle Thurston were told it was unlikely he would live through the night.
But he beat the odds and is living a fruitful life.
Now Lyall Thurston is being credited with a public health initiative which will mean fewer babies are born with spina bifida and other neural tube defects.
The former national president of CCS (formerly the Crippled Children's Society) celebrated quietly at home at the weekend after Friday's announcement that bakers in New Zealand and Australia will be required by law to add folate to bread within the next two years.
Public health officials say the move will see up to 14 fewer babies born with spina bifida in New Zealand each year.
The decision, made by the Food Standards Australia New Zealand Authority, comes 17 years after Mr Thurston started campaigning for mandatory fortification.
The issue is close to his heart - his oldest son Simon was born with spina bifida in the late 80s.
It was around the time research was mounting worldwide about the links between vitamin deficiency and birth defects. In 1990, professors of epidemiology in Australia published the first conclusive study which proved raising folic acid levels in the blood of women of child-bearing age lessened the incidence of babies born with neural tube defects, such as spina bifida, by up to 70 per cent.
Mr Thurston immediately jumped on the "fortification bandwagon", lobbying bread manufacturers and millers to add folate to flour or bread - a move which met with some resistance.
"Industry got quite vehement in their opposition to this public health initiative," he said. "They regarded it as the 'medicalisation' of food and indicated we would have to get the [food safety] minister to make them do it."
Countless meetings with politicians followed and eventually he achieved support for fortification from all political parties - with one concession.
The Green Party wanted to retain some choice. As a result in New Zealand, folic acid will be added to the breadmaking process and organic and non-yeast breads will be exempt. The situation is different in Australia, where folate will be added to flour.
Mr Thurston said the fight for fortification was one of "blood, sweat and tears" by the disability sector, where there was little money to wage a campaign.
The fact that it took 17 years to instigate change isn't lost on "Mr Folate", who boldly states successive governments committed "public health malpractice" by dragging their feet. "What they effectively did in those 17 years was commit up to 1000 New Zealand children to wheelchairs."
Opponents have claimed fortification will lead to an increase in the number of twins and greater bread costs. But he is quick to point to research which shows increasing folate levels reduces the incidence of coronary heart disease, stroke and cervical cancer.
He also shrugs off the suggestion that fortification of any food product is tampering with nature.
"I say to those people walk in our shoes. Having a child with spina bifida is challenging for any family."
Like 95 per cent of children born with spina bifida, Simon had tubes inserted into his brain to drain away spinal fluid.
He has gone on to live a successful life. Last year he completed a Bachelor of Arts degree at Victoria University, majoring in media, political science and English literature. He is completing his honours in political science and is hoping a scholarship will help him achieve a Masters degree at the University of Southern California next year.
Spina bifida affects about 75 New Zealand pregnancies every year. Mr Thurston is happy fortification will now mean fewer babies are born with a preventable birth defect.
"One baby born with spina bifida is one too many."
`Mr Folate' celebrates after 17-year battle
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