Ryder

His parents were told he would probably only have a year to live. “Today, Ryder is a normal four-year-old boy (pictured with parents Kelly and Alan and sister Charlise) who loves life and has no idea how sick he has been.” – Kelly

In 2022, Kelly and Alan Montgomery heard the news that no parent should have to hear – their little boy Ryder had a serious brain tumour.

Ryder was only 10 months old. He was just starting to crawl and enjoy life; the only reason Kelly had taken him to the doctor was because he had a cough. While she was there, she asked about the strange droop that had developed on his face.

The diagnosis wasn’t good – he had ATRT, or Atypical Teratoid/Rhabdoid Tumour, a rare, aggressive and fast growing brain cancer. It was close to his brain stem and his parents were told he would probably only have a year to live.

Kelly’s younger sister Lisa had died of a brain tumour at age seven. As an older sibling, Kelly knew what her own daughter, Charlise, would go through.

‘I felt for my mum too because she went through it with her child and now she’s going through it with her grandchild too,’ says Kelly.

Ryder was enrolled in the Zero Childhood Cancer Program (ZERO), supported by Luminesce Alliance, that provides molecular testing of cancers to identify precision treatments.

Analysis found Ryder was born with a germline mutation, a genetic problem passed down from a parent that increased his risk of ATRT.

The discovery meant his treatment could be precisely targeted, and that his sister Charlise could also receive genetic testing. Luckily, she is not a carrier of the faulty gene.

‘I had not heard of precision medicine until then,’ says Ryder’s mum, Kelly. ‘My mum sees a big change from 30 years ago when they couldn’t do anything for my sister.’

Ryder had surgery, chemotherapy and radiotherapy, and a second surgery that removed the tumour. His treatment ended in 2023, but there was still a very high likelihood the cancer would return.

The ZERO program recommended he should start a clinical trial of a drug called Tazometastat, a targeted therapy to reduce the risk of recurrence.

Today, Ryder is a normal four-year-old boy who loves life and has no idea how sick he has been. He still needs a scan every three months, but his chances of survival are significantly improved because his doctors understand his cancer’s unique genetic code.

One day, we hope sophisticated molecular testing will be offered to all children like Ryder, and that our growing understanding will lead to the discovery of new drugs that work against cancers in children and young people.