Jack’s tumour tissue had become part of the Zero Childhood Cancer project’s PRISM trial: a precision or ‘personalised’ medicine initiative in which researchers analyse the genetic make-up of cancer cells in search of targeted treatments tailored to each individual child. Loading “Children who come into this program are really at the end of the line,” executive director of the Children’s Cancer Institute Professor Michelle Haber said. "They are the worst of the worst cases. This program gives hope where there was no hope before.” On Wednesday, billionaire miner Andrew Forrest and his wife Nicola announced their philanthropic organisation the Minderoo Foundation will donate $5 million to the Zero Childhood Cancer program.

The donation will enable the program to double the number of children enrolled in its trial and come closer to offering personalised medicine to children diagnosed with deadly high-risk or relapsed cancer by 2020. One in five children diagnosed with cancer in Australia will die, the equivalent of three children every week. Each year about 200 children and adolescents in Australia are diagnosed with cancers that are extremely difficult to treat and have a less than 30 per cent chance of survival. Loading Replay Replay video Play video Play video No child, cancer or tumour are the same. Their unique genomic and biological signatures are different, and so are the drivers of malignant cancer cell growth when conventional treatment fails.

Finding these specific genetic markers, and targeting them with the right drug for the right child at the right time will be the key to reaching 100 per cent survival for childhood cancers, Professor Haber said. Jack was diagnosed with ganglioglioma in February 2017. He underwent surgery to remove a mass the size of a matchbox from his right temporal lobe. Ganglioglioma rarely comes back, but Jack’s did, “with vengeance” a year later, Ms Rosati said. He deteriorated rapidly, undergoing multiple surgeries, chemotherapy, blood transfusions and weekly lumbar punctures to drain the build-up of fluid around his brain. He wasn’t responding to treatment, started losing his sight, could not walk and was in excruciating pain. “To see your son in that kind of pain … I try to blank it out but this is too important,” Ms Rosati said. “I need to tell people how important this Zero Childhood Cancer program is."

Loading The PRISM trial discovered Jack’s cancer had a gene mutation known as BRAF V600E which could potentially be targeted with a combination of two drugs more commonly used to treat melanoma in elderly patients. He started taking the oral pills every 12 hours. “At day 45 he was playing tennis and racing around being almost his normal self. Everyone involved in the program, and the wonderful people who donate: I can’t thank them enough, and I want them to know it’s working," Ms Rosati said. More than 200 children have been enrolled in the trial. In more than 70 per cent of cases the researchers were able to recommend personalised treatments.