A simple play in the backyard can be a dangerous experience for Amielle Walker.
The Sydney youngster, 8, has been diagnosed with a rare genetic disorder known as Xeroderma Pigmentosum - or XP - which sees her suffer from extreme sensitivity to UV rays from sunlight.
Her sibling Taya, 3, is displaying similar early symptoms and all signs are pointing to her having the same disorder.
Mother of three Yvette Walker told Daily Mail Australia she first knew something was wrong when her little girl suffered severe burns from a casual day playing outside.
It means life's simple pleasures such as heading to the beach during the middle of the day or going to the local park in glorious sunshine are out of the question for the siblings.
Sydney siblings Amie and Taya Walker (pictured right) are living with xeroderma pigmentosum, which sees the girls suffer extreme sensitivity to UV rays from sunlight
After a trip to the local park - and largely staying in the shade, Amie Walker (pictured) soon suffered horrific burns due to UV exposure from the sun
When the girls do leave their house - for school and other essential activities - they require beekeeper-type hat wear, loads of sunscreen and protective clothing from head to toe.
The family also carry a UV light detector at all times.
'Its been a tough few months since the diagnosis (of Amie) was confirmed.. plenty of tears have been shed,' their mother said.
'My husband and I are both (gene) carriers... and XP is diagnosed to roughly one in a million people in Australia - and has no cure.
'We knew something was amiss when Amie was severely burnt as a toddler after being outside one day, but quite a few doctors we spoke to hadn't come across the condition before, it is unusual.
'We want to spread the word about XP, the more people know about it, the better.'
Amielle, and most likely Taya too, are both missing a vital part of their DNA which repairs damaged skin cells in the body after exposure to UV radiation in sunlight.
This means their damaged skin doesn't repair in the same way other people’s skin does
