Isaiah Vidler was five months old when he started having seizures and was diagnosed with the condition hydrocephalus, which he says is not uncommon, but is little understood by most people.
Now 24, the Dapto man has had 17 brain surgeries since then, and wants to use Hydrocephalus Awareness Month this September to let more people know about the disorder.
"When I was a baby, my parents put me to bed one night and then they came to check on me and I was having a really bad seizure, then I was sent to the hospital and that's when I was diagnosed," he said.
"When I was going through primary school and high school I missed out on a lot of it because I was just in and out of hospital.
"I've had 17 brain surgeries throughout my life."
Hydrocephalus is a neurological disorder caused by a buildup of cerebrospinal fluid in the cavities deep within the brain, and can be present at birth or acquired through injury or illness.
With the build up of fluid, the brain can't process it, and can enlarge if it is not treated.
While life now is much easier than when he was young thanks to a shunt in his brain which helps to make sure the fluid doesn't build up, Mr Vidler said he will always have hydrocephalus as there is no cure.
He will likely have to have many more brain surgeries to replace the shunt, he said.
"There are moments where my health can deteriorate, I can start having seizures and I can be very confused," he said.
"If there is a sign of a blocked shunt, I do need it to be replaced. If there are signs that there is a blockage, I normally have about 24 to 48 hours for it to be replaced my body starts shutting down."
Now a student of journalism at the University of Wollongong, Mr Vidler is hoping to raise funds for the Hydrocephalus Support Association, which works to empower the Australian hydrocephalus community.
"I just want it to be possible for people with the people with the condition to be able to live a good life like I have," he said.
"I've known people who didn't get a proper treatment as I did and they're not able to walk on their own or even speak."
Mr Vidler said he was grateful for the support of his parents, and wanted to raise awareness of his condition to inform others that there were ways of getting support.
"I wish I could tell my younger self that you're going to be ok, you're going to achieve so many things when it comes to your career and university," he said.
"I'm hoping that people could be encouraged to donate to help people enrich their lives living with the condition."
Sign up for our newsletter to stay up to date.