Tracey Menser says her boy Jack might be alive today with the advances into genetic disorders that Children's Medical Research Institute is researching, and an earlier diagnosis.

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, which when passed to the son 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."