A 22-YEAR-OLD with over 130,000 TikTok followers was born with a genetic condition so rare that less than 20 cases in medical history have ever been recorded. Barber Say syndrome has no known cure and its side effects include excessive hair growth, papery thin and fragile skin, outward turned eyelids and a large mouth. Kawana was born without eyelids and her gums grow continuously - this means she has had more than 20 surgeries on her mouth and will keep getting them for the rest of her life. Kawana has a special relationship with her doctor Marco, a genetics specialist who has been following Kawana since she was born. Having not seen each other for over a year due to the pandemic, Kawana will be finally paying Dr Marco a visit.