Q1 TURNS BLUE FOR BATTLER

WILLIAM O’Rourke’s parents won’t let a debilitating genetic disorder stop their six-year-old living a full life.

The Gold Coaster was just six months old when he was diagnosed with a condition called neurofibromatosis (NF) Type 1, which causes tumours to form on nerves in the body, including the brain and spine. It affects one in every 2500 adults and children and on average, every three days a child is born with NF in Australia.

William has an optic nerve glioma; a tumour in his brain that can cause a deterioration in his vision. Unfortunately, treatment is limited but he’s been closely monitored. He also has fine and gross motor delays and a significant speech-language delay.

His mum Amy said early intervention had been the key to supporting her son to maintaining age appropriate development.

May is Neurofibromatosis Awareness Month and the Children’s Tumour Foundation, which supports families such as William's, asked The SkyPoint Observation deck to help bring the condition out of the shadows by turning blue.

Mrs O’Rourke hopes as her son grows “he will speak openly of his challenges, without the fear of shame or stigma that can so often come with disability”.

“It will only be when the community around us recognises this significant illness and the impact it has, and will continue to have, on individuals and their families, that change might happen.”

Details ctf.org.au/ outoftheshadows

Picture: Jerad Williams Gold Coast boy William O'Rourke, 6, who has a rare form of tumour, at the Skypoint Observation Deck at Q1 in Surfers Paradise, which will be lit up blue in May as part of World Neurofibromatosis Awareness month.