DAEMON Vuzem is no ordinary child. He has fought bigger battles than most and is still smiling.
Daemon has a disease called Leigh Syndrome.
It’s a neurological disorder with a short life expectancy.
While the prognosis is not good, at 11-years-old Daemon is doing better than most because many children with the syndrome don’t survive beyond age three.
“Doctors say he has about two years left,” Rodney said.
“He is developmentally delayed and unable to walk, but still a wonderful, happy child.”
Rodney spoke to the Moreton Border News, in the hopes of raising awareness of the disease.
It’s also Rare Disease Day on February 28, which is an opportunity for parents like Rodney to connect with their community and share experiences.
Rodney and Daemon live in Wanora.
Daemon is enrolled at Beenleigh Special School.
Leigh Syndrome usually becomes apparent in the first year of life.
The condition is genetic and causes the sufferer to experience progressive loss of mental and movement abilities.
For some like Daemon, there’s difficulty in swallowing and muscle weakness.
“Daemon was diagnosed with the syndrome at around two-and-a-half,” he said.
“His mother noticed the signs because she had a child before him who had the disease and passed away.
“We knew it was genetic and there was a chance he’d have it, which is what happened.”
Rodney doesn’t live with Daemon’s mother, but they co-parent and time is shared.
He takes Daemon on outings and tries hard to provide a good quality of life, but it’s not easy having a child this ill.
“He’s had a few regressions as the disease has progressed,” he said.
“He doesn’t talk much now and is losing his hearing.
“When a child with this disease is sick, it could be a cold or flu, they go backwards developmentally.”
Daemon lost the ability to walk a few years ago.
“He uses a wheelchair and that’s how we get around,” he said.
“The thing with that is he’s now weighing 60 kilograms and pushing him is hard work.
“We’d love the use of an electric wheelchair because it would make excursions so much easier.”
For now, the father and son do what they can with what they have, spending time together and making memories one day at a time.
