There’s Vivid, there’s Enlighten, but quite frankly, the green and blue lights that will shine for World Neurofibromatosis Awareness Day on Wednesday 17 May are brighter.
Neurofibro-what-now? Yes, it’s a little-known condition, hence the lights that will shine on Canberra’s landmarks (and the Empire State Building if you’re in the neighbourhood) to highlight the condition.
It’s actually more common than you think, with about 10,000 Australians living with the condition. Children’s Tumour Foundation CEO, Leanne Dib, says every three days a child is born with the condition across the country,
In Canberra, that was Skye. When she was a child, her parents noticed numerous spots all over her body (like birthmarks). This raised concerns as her father, Chris, had NF. He still faces challenges today. After an MRI and blood test, it was confirmed that Skye had NF.
Despite delayed physical development in crawling and walking, Skye was able to go to preschool at Montessori school, Holder, which made a marked difference, particularly with her speech and independence. She now attends a normal preschool and will start Kindergarten next year at a mainstream school.
“It’s the most common genetic condition but not well known,” Leanne says. “It’s a group of genetic conditions that cause tumours to form in the body. Progressive and unpredictable, it can lead to significant health issues such as deafness, blindness, physical differences, bone abnormalities, learning difficulties, chronic pain, and cancer in 10 per cent of cases. There is no cure and treatment options are limited.”
There is good news for Skye. The tumour behind her right eye has stopped growing – if not gotten smaller. So, when you see Old Parliament House, the Carillion or Questacon glowing green and blue on Wednesday 17 May, remember Skye, remember this story and help to raise awareness. Even doctors can miss the symptoms, some cases taking multiple visits to a GP before receiving a diagnosis. If you feel inspired to support research into this condition, you can visit the Children’s Tumour Foundation website: Stepstowardsacure.com.au
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