James
As a first-time Mum Ana expected sleepless nights and endless cuddles. Instead, she found herself sitting by a hospital bed as baby James underwent intensive surgery.
I just wanted to be the best mum and just take him home and cuddle him. In the early stages, it was hard, extremely hard. It was very scary and confronting."
James is one of the 2026 faces of Jeans for Genes, the iconic fundraising day that supports research at Children’s Medical Research Institute (CMRI).
When James was born, doctors quickly discovered that something was wrong. His eyes were bulging, he was extremely sensitive to light, and he had glaucoma.
Within days he had genetic testing and was diagnosed with Axenfeld- Rieger syndrome - a rare genetic condition that in the eye, impacts the iris and cornea and can cause heart, skeletal, and hearing issues.
“When someone experiences news like this, that their child is born with a genetic condition and that they may not see… that was devastating,’’ Ana said.
James needed urgent surgery to treat the glaucoma. Within months he also had corneal transplants on both eyes.
One of them worked, which was quite amazing. And so that gave us hope that James' vision would be somewhat there."
"He had a second corneal graft redone a year later, and unfortunately that failed."
“Day-to-day life for James is like any other child, I imagine. He's full of energy. He's started kindergarten,’’ Ana said. “He thrives at school. He thrives with connecting with his peers. His vision hasn't really stopped him from doing the things he wants to do.
“I've worked really hard in showing him that even with his visual impairment, that he can engage with others and I'm astounded by his curiosity.’’
After seeing the work being done in CMRI’s Eye Genetics Research Unit, Ana was eager to become an ambassador for Jeans for Genes.
“Our experience in the lab at Children’s Medical Research Institute was amazing. It's such a positive team of experts and scientists researching the eyes and how science can help.
Jeans for Genes it's a great cause, it's great research that's being done to help all types of children experiencing things that no-one wants to experience."
"It’s giving kids and their families the hope for a better future to help them grow and flourish."
Jeans for Genes is one of Australia’s longest-running charity days and this year it will be held on Thursday 6 August.
Sign up now to fundraise your own way. You can Bake it Blue with a cake stall, get active by walking, running, or skipping or simply wear jeans - just like millions of Australians have done for more than 30 years.