Jett
Finding out that their newborn baby had profound hearing loss was very difficult for Jett’s parents, but then discovering it was related to a genetic condition with even further challenges to come was heartbreaking.
Jett is one of the 2025 faces of Jeans for Genes the iconic fundraising day that supports the labs at Children’s Medical Research Institute so scientists can do work today to change lives tomorrow.
Born healthy, Jett’s parents Beth and Brad found out through the newborn hearing test that he was profoundly deaf. He was fitted with cochlear implants at 6 months old. It was then suggested to Beth and Brad that they may want to do genetic testing this is when they discovered that Jett had Usher Syndrome Type 1B which impacts hearing, vision, and balance.
It rocked us to the core,"
“You jump onto Google, trying to understand how bad is the vision loss going to be? And I think that's where we struggled the most, because it's such a rare disease, trying to find information and statistics is very difficult.’’
Jett had already found walking difficult and has a lot of falls due to his balance issues. His parents were told he would be legally blind by the age of 18.
“We go for annual eye tests with his ophthalmologist, to look for signs of the deterioration through retinitis pigmentosa. We dread those appointments because it's almost like a black cloud hanging over us just waiting for the news that it's starting to happen.’’
The family have been supported by the organisation, UsherKids Australia, who connected them with CMRI.
They met Associate Professor Anai Gonzalez Cordero who is working on gene therapy for Usher Syndrome with the hope that one injection could repair the faulty gene and halt the vision loss. They donated Jett’s blood to contribute to research.
“That’s the Holy Grail,’’ Brad said.
We hope it becomes a reality. The team out at CMRI are doing a fantastic job in progressing the science along.’’
Beth said research gives Jett options for his future.
“In his lifetime, we hope there is something that he can do to help prevent his vision loss. Without CMRI we wouldn't have that hope.’’
Jeans for Genes is one of Australia’s oldest charity days and this year it will move to the first Thursday in August – after finding that many of our capital city streets and offices are quiet on a Friday.
It may be on a different day but the challenge of finding treatments and cures for 1 in 20 Aussie kids with conditions like cancer, cystic fibrosis and other devastating genetic diseases remains the same.
Jeans for Genes Day allows labs to stay open, science to continue and lives to be saved.
Sign up now to fundraise your own way. You can Bake it Blue with a cake stall, do walking, running, skipping, or any form of exercise you like – or simply wear jeans just like millions of Australians have done for more than 30 years.