Finding cures for children's genetic diseases


Face of Jeans for Genes win Bravery Award


This year, Jeans for Genes put kids out the front of its campaign as “heroes’’ and one of those very special stars has been acknowledged with a NSW Children’s Week Award for Bravery.

Max Colgin, 7, featured in the 25th Anniversary of Jeans for Genes television and ad campaign, which highlighted the challenges of living with genetic conditions.

On Wednesday night, the Office of the Advocate for Children and Young People handed out Children’s Week Awards. The seven awards, ranging from Act of Kindness to Environmental, are designed to recognise issues that impact on children and their futures.

Max, and the other five children in this year’s Jeans for Genes campaign, were nominated by Children’s Medical Research Institute for the Bravery Award. This award acknowledges a child who displays ongoing acts of courage, strength and determination.

At the age of two, Max was diagnosed with Autism Spectrum Disorder Level 3, Global Developmental Delay, and Attention Deficit Disorder.

Mum Lorel Colgin said Max had continued to defy all the paediatrician, speech pathology, and occupational therapy reports highlighting everything he isn’t capable of.

“Persevering through his conditions daily, Max shows tremendous courage as he strives to live life like any other seven-year-old boy,’’ she said. “What was most brave was agreeing to be a Jeans for Genes representative in 2018 and raise awareness for genetic disorders in the community and at his school.’’

Max didn’t speak more than single words until he was four, and even now, it’s hard to communicate. But when asked about Jeans for Genes, he becomes excited and says, “Jeans for Genes…Linke…Henry,” naming the other kids in the campaign.

While his lack of communication makes friendships and school harder, Max’s courage and resilience in the face of ongoing adversity has enabled him to handle mainstream kindergarten and first grade. He has hard days, suffering from anxiety attacks where he won’t get out of the car, gagging and vomiting from strong smells, making eating difficult, and struggling from hypersensitivity to the point of needing industrial ear muffs to cut out noise while sleeping.

However, Max is brave, pushing his own limits and coming out the other side, saying, “That wasn’t so bad.” For his recent appearance in the School Spectacular, he even went so far as to say, “That was fun!”

"He has an amazing, infectious smile and his classmates love and support him. He is both an inspiration and a success story,” Lorel said.