Julian Buyks, a fifth-grade boy living in Alberta, stands out due to his curly hair, which is a hallmark of the rare genetic disorder giant axonal neuropathy (GAN) that he lives with. GAN is a condition that affects fewer than 100 people worldwide, gradually causing children to lose their ability to walk, eat, and breathe. Despite the challenges, Julian’s family fills their lives with joy and adventure, making the most of every moment they have together. His mother, Megan Buyks, mentioned that it is important for them to stay one step ahead of the disease in managing Julian’s condition.
On Curly Hair Day, celebrated on May 2nd, Julian’s school in Innisfail rallied together to show support and raise awareness for GAN. This event, which started in 2023, has become an annual tradition where students and staff wear curly wigs or curl their hair to symbolize solidarity with Julian and others affected by GAN. Megan, who is also a teacher at the school, expressed gratitude for the support shown by the community, emphasizing the importance of raising awareness for the rare genetic disorder. Despite being one of only two known GAN cases in Alberta, Julian’s family continues to fundraise in the hopes of finding a cure for the condition.
For Julian’s family, every day is cherished and considered precious, as they navigate the challenges that come with managing GAN. Embracing the moments they have together, they find joy in activities like skiing, playing cards, and spending time as a family. Megan Buyks, Julian’s mother, reflected on the importance of treasuring each minute spent with Julian, highlighting the resilience and strength they have as a family in facing the difficulties presented by the rare genetic disorder. Their positive outlook and determination to stay ahead of the disease demonstrate their unwavering commitment to ensuring Julian’s well-being.
Living with a rare genetic disorder like GAN can be a challenging journey, but Julian’s family remains steadfast in their efforts to support him and raise awareness for the condition. Through events like Curly Hair Day, they aim to bring attention to GAN and inspire others to join their cause in finding a cure. The community’s support has been instrumental in helping the family navigate the ups and downs of managing Julian’s condition, reinforcing the importance of togetherness and compassion in facing rare diseases. Despite the difficulties they encounter, Julian’s family continues to approach each day with hope and determination, making the most of their time together and spreading awareness about GAN.
