Walking into the Emergency Department at the Perth Children’s Hospital with their sick two-year-old daughter Amelia, Brianna and Russell felt…
At 13 years of age, Conor has experienced more medical procedures than most people go through in a lifetime.
He was born with Systemic Lymphangiectasia, a very rare medical condition that results in swelling throughout his body, a lowered immune system and the collection of fluid in his chest and abdomen.
Due to the rare nature of this disease, Conor’s prognosis is unclear, with a range of physical and drug therapies being trialled over the last 13 years. Current treatment involves replacing the proteins and nutrients that he loses, draining the fluid from his chest and abdomen, growth hormone injections and boosting his immune system.
He regards himself as a ‘frequent flyer’ at Princess Margaret Hospital, where a wide range of specialists are involved in Conor’s care, including the immunology, respiratory, cardiology and palliative care teams.
I think that I see almost every team in the hospital, he jokes. A lot of people stop and say hello every time I come.
This is as much a result of the extended amount of time he spends at PMH and his friendly, warm personality.
Conor’s care extends from the hospital to his home with the support of nursing staff and training provided to his mum, Sam (pictured above with Conor). Without this, Conor would have to spend at least three days a week in the hospital, receiving intravenous blood products, in addition to his regular appointments. Understandably, his parents are very grateful that he can be treated at home.
“It allows him to have a somewhat normal life, attending school, going to youth group with his best friend and spending quality time with his brother and sister, “ explains his dad, Justin.
Despite the difficulties he has faced and will continue to face into the future, Conor is a cheerful, strong, cheeky boy, with a well-developed sense of humour, love for PlayStation games, vegemite, pizza and pasta and all things West Coast Eagles.
“I believe that I have the best doctors and nurses in the world,” he says seriously. “They have saved my life so many times. Without them, I wouldn’t be here. But I am going to continue fighting and with them on my side, I will always win.”
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