Sisters who suffer a one-in-a-million disorder that causes their skin to blister after just a few minutes in the sun have called on the Australian public for help.
Amielle, 12, and Taya Walker, 7, were born with a genetic condition called Xeroderma Pigmentosum (XP), which affects one in a million people worldwide.
The rare inherited multi-system disorder means ultraviolet (UV) rays are dangerously toxic to their skin and increase their risk of skin cancer 10,000-fold.
Every day, the girls have to put on layer upon layer of clothes just to leave their house, including a plastic hood with a UV filter screen, gloves and long-sleeves.
Their mother Yvette told Daily Mail she first noticed her daughters' skin turning 'puffy and red' and sought professional advice.
'We were told (by doctors) that there's nothing wrong or there's nothing that could be found and that (Amielle) just had sensitive skin,' she said.
'I knew that wasn't the case, that there was something else.
'Despite my continued questioning and seeking advice from doctors over many years, I just kept getting told there's nothing that they know.'
Amielle, 12, and Taya Walker, 7, have a rare condition called Xeroderma Pigmentosum (XP), which means they cannot go outside without UV protective gear including hoods
Since birth, the sisters from Phillip Bay in Sydney have seen their faces burned after being exposed to ultraviolet (UV) rays (pictured, Amielle when she was a baby)
Yvette Walker (pictured centre with her family) said the family considered moving away from Australia but realised they would face challenges anywhere
XP dramatically increases the risk of basal cell carcinoma, squamous cell carcinoma and melanoma
In December 2020, Yvette and her husband Nick returned to their Phillip Bay home from a holiday to find Amielle's face puffy, red and burnt.
'She just looked at me, and said: "It's not my fault". I said, "I know, sweetheart",' Mrs Walker said.
A new dermatologist finally diagnosed the girls with XP, which dramatically increases their risk of basal cell carcinoma, squamous cell carcinoma and melanoma.
Approximately 25 per cent of those with the disorder also develop nervous system abnormalities, including progressive neurodegeneration such as hearing loss.
'The diagnosis was the start of a massive upside-down change in our life, learning what XP meant and the consequences of sun exposure for them,' Yvette said.
'It really is night and day. Just from getting out the door, to what school looks like, what sports they can do, and where they can go with their play dates.
'Some parents don't really want to engage in it. It causes anxiety for them to have the girls in their care, or they might not know what to do, so our circles have shrunk a lot.
'We then had to figure out how we live with this in Australia when we're heading into our first summer.'
XP means Amielle and Taya (pictured) face an increased risk of developing skin cancer
The family are raising funds to build a structure that will make their garden UV protected
The entire build is expected to cost $280,000 (pictured)
Despite Yvette and Nick considering moving to another country, they decided to stay in Australia as their 15-year-old son Quinn is settled and they would struggle with UV exposure wherever they moved.
Life for the Walker family has been completely transformed since the girls' diagnosis. The windows in their home, their cars and at Amielle and Taya's school have been fitted with UV filters and the girls wear long clothes that protect them from UV rays.
The family are part of a global Facebook community page for people with the rare disorder that only has 120 members, including just six other Australian families.
The family is now hoping to build a council-approved $280,000 structure in their backyard with fabric blinds and UV-resistant glass.
A GoFundMe campaign has so far raised $102,000 out of the family's $250,000 goal.
'They won't get better because of the cumulative nature of XP and because it's so rare, there isn't enough evidence on what their trajectory is like,' Yvette said.
'The neurologist has said to us that the best way to reduce the impacts of neurological decline is to be as fit and healthy as you can be.
'You can't stop XP from happening, but if you're in a better state when it does happen, you know... that structure in the garden is as best we can do for our kids.'
The family is also hoping to carry out a $250,000 improvement to their garage that will make it UV safe and build a protected rumpus area.
CRE: https://www.dailymail.co.uk/news/article-15351235/sisters-Sydney-XP-rare-condition.html