John: Recessive Dystrophic 

It would mean everything to John to be able to do the simple things – drive a car, ride a bike, hold down a job, help out his family, and to be there for the big things – to see his team Port Adelaide win a flag!

John Hutchins is a 21-year-old with a big heart and a cheeky sense of humor, living on a sheep farm in Tarnma with his parents, Therese and Neville Busch. John has Recessive Dystrophic Epidermolysis Bullosa (RDEB), the most severe form of EB, which causes his skin to blister and tear easily due to mutations in the COL7A1 gene. The condition affects the production of type VII collagen, the “glue” that holds layers of skin together, leaving John vulnerable to severe skin damage from even the lightest touch.

As an ambassador for the EB Research Partnership Australia (EBRPA), John is dedicated to raising awareness about EB and the challenges faced by those who live with it. Despite the daily pain and constant care his condition requires, John’s spirit remains unbreakable. He’s witty, determined, and quick with a joke, even as he faces treatments that would overwhelm most people.

While his condition imposes limitations on what he can do, John doesn’t let it hold him back from living a full life. He has embraced his role as an EB Ambassador, regularly flying interstate for special events. He stays connected with the world through his phone, keeping in touch with loved ones and continuing his work as an ambassador. At home, he enjoys spending time with his close-knit family and his loyal dog, Penny. His mission is to raise awareness about EB, helping others understand its impact and advocating for more awareness and funding for a potential cure. With resilience and an infectious sense of humor, John continues to inspire those around him, making a lasting impact as an EBRPA ambassador.
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Thanks to help from DEBRA Australia, the Adelaide Children’s and Royal Adelaide Hospital teams and the unwavering love and support from his adoptive parents Therese and Neville Busch John has beaten death twice and is here and working to get the word out about EB.