A couple who fear their daughter may not live to see Christmas have spoken out about her 'one in a million' condition.
Six-year-old Fia cannot wait to open her presents on December 25 with her mum and dad Lian and Matt Kent, and her three brothers and sisters.
But in 2016 the brave little girl with a 'cheeky personality' was diagnosed with Alexander Disease, one of only 500 cases recorded worldwide since 1949.
The disease is a progressive and incurable condition that can cause enlarged brain and head size, seizures, stiffness and developmental delay.
According to Lian and Matt, who live in Hastings, East Sussex, their daughter's mutation of the disease is so rare she is the only person in the world to have it.
The condition limits life expectancy to just 10 years, and her parents fear Lia may not make it to Christmas.
Find out more about Fia's extraordinary and tragic story in the video above.