For most Aussie kids, summer means freedom – long afternoons in the sun, backyard cricket, beach trips and pool parties.
But for sisters Amielle, 12, and Taya, 7, sunlight is life-threatening.
The Sydney girls live with Xeroderman Pigmentosum (XP), an incredibly rare genetic condition that leaves them unable to repair UV-induced DNA damage.
Even the smallest amount of sunlight can cause severe burns and raises their risk of skin cancer by up to 10,000 times.
They also have a 2,000-fold increased risk for cancer of the eye surface.
As they prepare for their fifth summer since their diagnosis, the heat is already “relentless.”
“It’s sad and confronting,” their mom Yvette Walker told news.com.au during an emotional interview.
“No amount of UV is safe for them.”
XP is so rare that the Walkers only know of six other families in Australia with the condition.
Amielle was diagnosed at seven, and by the time doctors confirmed it, the damage on her hands already resembled what would normally be seen on a 40-year-old.
Taya was diagnosed at two-years-old and doesn’t remember a world without these boundaries.
“There’s an anxiety there for Ami because she knows it leads to cancer,” Yvette said.
The disorder is genetic – a double recessive mutation causing a critical DNA process to fail.
Both parents are carriers, even though it hasn’t appeared in their family before.
Every day, the girls would return from school with major burns, particularly on their faces and lips.
When they decided to see a doctor, their concerns were initially dismissed.
“They told us it was fine and there was nothing to worry about,” Yvette said.
After pushing for answers, the family was finally given some closure, but it came at the cost of their lives “shrinking massively.”
“When we first told Ami, she put herself into bed and cried. There was a lot of resistance to everything we needed to implement,” said Yvette.
The news was life-changing for Yvette and their father, Nick, yet alone seven-year-old Ami who just wanted to play in the sun with her friends.
“We had to take her out of school for six weeks,” she said.
“We do far less than we did before, and that’s a grief.
“We just hit these little grief pockets now and again.”
A normal day outside demands full body protection.
A UV-blocking hat with German-made plastic face shields, gloves from the US, UV-rated tops and pants, thick socks, shoes, and sunscreen.
Every item is monitored for rips or holes, and every outing must be planned down to the minute.
The girls’ school has been refitted with UV-filtered doors and windows and teachers co-ordinate daily to ensure precautions are being taken.
Even then, they will often miss out when the heat becomes too intense.
But the Walkers push hard to ensure the girls still get the chance to be “normal” kids.
When Amielle wanted to compete in her school swimming carnival, her parents made it happen.
She donned a full-length body suit, gloves, thick socks, a sports balaclava and full-face snorkel fitted with UV film.
“It was astounding,” said Yvette.
“We told her that if she wanted to do it, we would make it happen.”
She’s also made the PSSA netball team – wearing a sports hood that connects under her arms – but still sits out on hot days.
Year 6 camp in Canberra required an almost military level of planning.
“We checked every facility, every toilet and every meal situation,” said Yvette,
Birthday parties, playgrounds and simple family outings come with layers of logistics that most parents can barely imagine.
Invitations have dropped off, and as much as it hurts, Yvette says she understands why.
“It comes at a cost for a parent to have to consider,” she said.
Some of Amielle’s closest friends now host night-time movie nights, torch games and roast smores over fires so she can join in safely.
“Those beautiful modifications mean so much,” said Yvette.
The Walkers’ biggest project – and highest hope – is a council-approved UV-safe backyard.
It’s a fully enclosed space that would finally allow the girls to play outside during the day.
It’s not just shade; it’s a precision-engineered structure where every millimeter must block UV. No gaps, no leaks, no risk.
“It’s so meticously planned. It’s surreal,” said Yvette.
The cost is enormous, with the family looking at $560,000 for the full build, with more than $100,000 for the roof alone.
NDIS rejected their funding application, suggesting the girls could use a “local playground” instead. The family is taking the decision to the tribunal.
NDIS has been contacted for comment.
“We’ve had so many knock-backs to get where we are today,” said Yvette.
“We’re exhausted. But this would change their lives.”
The build is scheduled to be finished by the December 19, and if all goes to plan it will be the first Christmas the sisters will spend outside.
When news.com.au spoke to the sisters, they were overjoyed about the new backyard.
Little Taya said she was most excited to sunbathe and wear her favourite dresses outside.
“It’s the little things,” said Yvette.
“We’ll be able to play outside and have the doors open. We’ll even have airflow throughout the house.”
Yvette believes that people have a lot to learn from her daughters, who are immensely brave and positive given the situation they’ve been presented.
A friend of the Walker family has set-up a GoFundMe, in the hopes of alleviating some financial pressure as they navigate their new build.
“We’re going public for awareness, education and fundraising, in the hope that people get a bit of an understanding about living a day in the life in our shoes,” said Yvette.
You can donate or read more about Amielle and Taya’s story here.
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