Jack was diagnosed with a rare degenerative metabolic disease Adreno-leuko-dystrophy (ALD) when he was six-years-old.
The rare disorder was the subject of 1992 Hollywood film 'Lorenzo's Oil'. ALD is an inherited genetic disorder linked to the X chomosome. THe mother carries the gene and, when passed to the son, it can be fatal in its most severe form.
Jack developed a fatal strain of ALD.
"One of the hardest things was knowing nothing could be done to save Jack at the time.”
"We had to watch our fun-loving and beautiful boy lose all his functions.
"I am right behind Jeans for Genes, because I don't want any other parents to have to go through the heartbreak my husband Scott and I had to go through with Jack.
"The work that CMRI is doing is so important for the health of all children, not just here in Australia, but around the world."