A dedicated father stuns the medical world as he attempts to find a cure for his son’s illness.
“The worst part was we could see the fear on his face when Massimo would try and sit up.” Sally Damiani, mother
“I don’t think I’d ever come across a parent quite as driven to find the cause of his child’s disease.” Rick Leverton, treating neurologist
When Stephen Damiani and his wife Sally were first told that their baby boy Massimo had a mysterious disease, the first thing they did was hit the medical textbooks.
With the clock ticking, and without any scientific or medical training, Stephen threw himself into the complex and arcane world of genetics.
When Stephen helped isolate the gene that was responsible for his son’s type of leukodystrophy, he not only shocked the scientific world he surprised himself.
“It’s the ongoing joke. I failed the Year 11 chemistry exam and ended up being published in the American Journal of Human Genetics.” Stephen Damiani
Australian Story first told the remarkable story of the Damiani family four years ago.
Since then Stephen and Sally have made huge strides in their efforts to find a cure for this disabling and deadly disease of the central nervous system. Now they are at the forefront of cutting edge research taking place in laboratories in Sydney, Melbourne and Brisbane.
“We’ve gone on to identify another 30 patients around the world with this exact condition. We owe it to Massimo to finish the mission he started.” Stephen Damiani