Rory’s favourite things are: Star Wars, Animals (giraffes/monkeys/snakes) and the colour yellow.

Rory lives in South Australia.

‘Rory’s quilt is now closed’

BIOGRAPHY

Rory went into heart failure at six days old. Until then we had no idea there was anything wrong. He had an interrupted aortic arch and multiple VSD's. He was flown to Melbourne at nine days old to have open heart surgery. 

While recovering from the surgery we were told Rory had 22Q Deletion. This caused the heart defect. He also has had liver and kidney problems, a low immune system due to an absent thymus gland, low muscle tone, talipes (his right foot), oblique talus (his left foot), and development delay. 

He walked at 2 years and ten months. He currently has five words and communicates by sign and has a communication device. He has problems with his palate and can't chew properly and his airways are narrower than should be. He gets a lot of upper and lower respiratory infections which lead to him having breathing difficulties.

Rory is getting stronger and has spent less time in hospital this year than in previous years. We know he will have to have more surgery on his heart in the future. But whatever happens to him, he keeps smiling.