When Amelia was born her parents knew there was something wrong instantly. She had difficult breathing, there was a hole in her heart, she had issues with her blood sugar and platelet count - according to her mum Elissa.

When Alessia was born her parents had no idea she would make medical history that would not only change (and save) her life – it would impact every other child born with the same fatal genetic condition.

It was 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.

Every day, Ollie’s parents are thankful for the cancer research that saved their son’s life, but they won’t stop campaigning for more to be done for the families who have lost their children.

When Sophia was born and diagnosed with one of the most common genetic diseases in Australia – her mum couldn’t believe that her lifespan may be less than 40 years.