Camden Haven toddler Rory Turnbull is continuing to fight for his life after recently being diagnosed with a rare genetic cancer.
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Rory has been served a hard start to his young life after he was born prematurely and has since experienced difficulties with his health, including effectively being able to breathe independently.
Rory's airways are roughly a third of the size of what a normal healthy child's airway should be and when he's sick they become even smaller.
In April Rory's parents Aimee and Arnold received a phone call from Rory's geneticist, where they were informed their son had a new diagnosis of MEN2B syndrome.
The syndrome comes with an increased risk of medullary carcinoma of the thyroid. An operation and further testing has since found Rory has this type of cancer.
Arnold explained during the surgery for Rory to have his nasogastric tube taken out and have a peg tube put in. Doctors discovered Rory's thyroid was enlarged and in further surgery doctors removed a mass the size of a golf ball from Rory's neck.
He said the cancer is present within the carotid artery and wrapped around his jugular. It's also spread through Rory's lymph nodes in his neck and chest.
Doctors were unable to remove Rory's thyroid, as the surgery was to risky to proceed.
Rory has been put on a trial drug in an attempt to fight against the cancer.
Arnold said he's already seen a big improvement in Rory's demeanour.
"It's changed him as a child. He's happier and healthier," he said.
The drug has also helped reduced Rory's calcitonin levels and he's reached 10kg for the first time in his life.
The family will have to travel to Sydney every 28 days for further testing and check ups.
Arnold and Aimee have been educated on how to effectively care for Rory at home in between visits.
Arnold said the family are taking each day as it comes and are trying to get on and deal with the situation as best as they can.
The couple are grateful for the constant support shown by the Camden Haven community. Arnold said it's great people are reaching out to them at this difficult time.
In October, 2019 the Camden Haven community rallied behind the family with a Camden Haven Charity Touch Day called Run for Rory.
The event was at Laurieton oval where 16 touch football teams from across the region came together for a day of on-field camaraderie for a good cause.
Rory will be three-years-old on September 28.
