LITTLE Jason is five years old. He goes to kindergarten in Launceston, loves to play and, to look at, is a perfectly normal boy.
However, the smiling tyke was born with a severe congenital heart defect called hypoplastic left heart syndrome, where his heart was severely under- developed.
Jason has undergone four open heart surgeries, a heart and lung operation and has suffered a stroke.
He has slight brain damage, one lazy eye, struggles to walk long distances and will eventually require a heart transplant.
Jason's mother Angie said there were weekly visits to the doctor, regular tests and, at times, months spent in Melbourne at the Royal Children's Hospital.
"It certainly makes you appreciate your children ... a lot of children with his condition have not made it," she said.
"I found out at my 20-week scan that Jason only had half a functioning heart and he has been through quite a lot, so we have to keep an eye on him.
"At one-day-old he had open heart surgery ... and he went into cardiac arrest during his second surgery 2 1/2 months later and ended up having a stroke.
"It was a struggle to get weight on him and the stroke gave him brain damage, so he is about a year behind children his age but very tough and smart.
"His left lung was also too small so he has had a lung and the fontan operation, which is supposed to be the last one but he will end up needing a heart transplant."
Angie said when Jason will need a transplant depends on how long his heart can hold out.
"A lot of it is just trying not to keep him as a cotton wool child and try to ensure he has a normal life, which is very difficult being in hospital all the time," she said.
Today, the Star Wars dress-up club 501st Thylacine Squad, of which Angie is a part, will be at Tasmanian EB Games stores to collect money for the children's charity Starlight Foundation.
Angie said the foundation was a huge help in entertaining her 10-year-old son Tyler while she was with Jason in Melbourne.