Julian Buyks might seem like any other fifth-grade boy, enjoying skiing, playing cards and spending time with his family.
However, it’s his head of light, coiled hair that sets him apart. Living with giant axonal neuropathy (GAN), a condition affecting fewer than 100 people worldwide, Julian’s family has embraced every moment with him, injecting joy and adventure into their lives. Kinky, curly hair is a telltale sign of GAN.
GAN is a rare genetic disorder that gradually robs children of their ability to walk, eat and breathe.
“It’s all about staying one step ahead of the disease,” said Julian’s mother Megan Buyks.
May 2 is Curly Hair Day, and Julian’s school rallied for the first time in 2023, donning curly wigs or curling their hair to raise awareness for GAN. It has now become an annual tradition. Students flaunted their curls in solidarity with Julian, whose curly hair serves as a marker of his condition.
“Curly Hair Day is about raising awareness for GAN,” said Buyks, who is also a teacher at Julian’s school in Innisfail. “It’s heartwarming to see all the kids rocking their curls and showing support.”
Julian is one of only two known GAN cases in Alberta. Despite the challenges, they continue to fundraise in the hopes of finding a cure.
“Every day is precious,” Megan says. “We cherish every minute we have with Julian.”
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