Meet the two Aussie sisters who can only play outside after dark.

When seven-year-old Taya Walker runs outside after sunset, she still cries "freedom".

Because for Taya and her 12-year-old sister Amielle, stepping into sunlight without protection could be deadly.

The two Sydney sisters are forced to watch life unfold from behind windows because they both live with Xeroderma Pigmentosum (XP) — a rare genetic condition that makes ultraviolet light dangerously toxic. Even the smallest amount of UV can cause severe burns and increase their cancer risk by up to 10,000 times.

Watch: Tammy Hembrow talk about cancelling her skin check five times. Post continues below.

With only one in 250,000 people worldwide affected by the condition, the Walker family has had to completely reimagine their lives around avoiding daylight. There is no cure for XP, the only way to ward against it is prevention.

"I mostly feel trapped, I can't go outside and just walk around and play with my friends," Amielle told Mamamia.

"When it's daylight, I have to gear up and choose if I wanna go out and not.

"It gives me less of an opportunity to be free."

The Walker family. Image: Supplied.

A journey to a diagnosis.

The first sign something was wrong came when Amielle was just 3.5 months old.

Her mother, Yvette Walker, took her to a park. Within hours, Amielle's skin turned red and started blistering.

"We were at a park sitting under a tree with sunscreen on and we probably would have been out for maybe half an hour to 45 minutes," Yvette told Mamamia.

"We were in shade, there was no direct sun, because I don't like sitting in direct sun. In the afternoon the burn started coming up and I was like, 'OK, this is a bit weird'."

The severe burn started developing within hours. Image: Supplied.

The concerned mother rushed her daughter to the emergency department, but there were no answers.

"They just sort of shrugged their shoulders and said, 'looks like it's just a bad sunburn,' and we're like, 'this doesn't look like a bad sunburn to us'," she said.

"There was some testing, but everything came back as 'normal'. We were just told, 'she can't get sunburnt like that again,' and read the riot act and told we need to be more vigilant."

For Yvette, that was difficult to hear.

"That was really hard to swallow as a mum, because I'm fair myself and I've always been vigilant with my skin," she said.

What followed were years of anxiety, unanswered questions and more severe burns.

"We spent the next years continuing to ask dermatologists, ask GPs. It didn't make sense it was just sensitive skin. She gets burnt through suncream, burnt through suncream and zinc," Yvette said.

"I lived with never knowing how she'd come back to me.

When Amielle turned seven, the family finally got answers.

After a particularly severe burn following two days at school, their GP put the family in touch with a dermatologist at Westmead Hospital's Burns Unit.

The specialist took one look and said: "I think she's got XP."

The diagnosis came with dual parts relief and shock.

"We kind of went into crisis slash paralysed mode," Yvette said. "Frantically researching and trying to understand. He told us 'she can't be exposed to any UV' and we're like, 'yeah, but it's summer and it's Australia'."

The level of sun damage on Amielle's skin was equivalent to what you'd expect to see in a 40-year-old.

When the diagnosis came, things also clicked into place for Taya, who was two at the time.

She had already started to exhibit the same sensitivity to sunlight. Taya developed photophobia after her eyes were so severely burned by UV light that she required hospitalisation.

Taya developed photophobia after her eyes were burnt. Image: Supplied.

Unlike Amielle, who had always been drawn to outdoor play, Taya had shown a natural aversion to sunlight, instinctively seeking shade as if her body knew what her family didn't yet understand.

Amielle asked about Taya's diagnosis, the 12-year-old displayed a wisdom far beyond her years.

"It was definitely sad and unexpected," Amielle said. "I don't really want her going through what I'm going through. But I guess we didn't really have a choice."

Navigating a new reality.

XP has forced the Walker family to completely restructure their world. Yvette learned to make special protective hoods, source UV-protective materials from Germany, and plan every outing with military precision.

"Going to a restaurant needs consideration. Where do we go? Where do we eat? Playgrounds are just a real challenge," Yvette explained. "There's nothing simple now."

The hardest moments come during Sydney's relentless summers, when the family is trapped indoors all day.

"Sometimes I'll put myself in time out and go outside and then little Taya sits at the window and she taps on the glass," Yvette said. "And I go, it's not fair that I'm out here and she's in there."

Going outside means having to wear extreme UV protection, which makes play impossible. Image: Supplied.

True liberation only arrives when the sun disappears.

"I feel like more free and be able to do more things," Amielle said about their twilight adventures. "I have more fun than being stuck inside, and I get fresh air."

Their after-dark world includes basketball on the driveway and playing on gym equipment. Despite living with the condition, the two girls are very athletic; Amielle favours basketball, while Taya loves dance.

At school, the sisters navigate a different reality. While other children play outside during lunch and recess, they often retreat to the library or classroom. When they do venture out on cooler, cloudy days, their protective gear — including hoods that limit peripheral vision — makes activities like cartwheels, dancing, or even running more challenging.

"I've been noticing with Taya especially that other girls might want to be doing cartwheels or dances, out in the playground. They're things that are just too tricky for her with her gear on," Yvette said.

"Even playing catch, it's more of a trip hazard."

Both sisters have become unlikely advocates for the condition and want to help others understand their reality.

Amielle said that when they're out together in their UV-protective clothing, they're often the recipients of strange looks and comments.

"I do get a few comments like, 'why are you wearing that,' but I guess it's pretty normal because they're curious," she said. "I'd like people to know why we have to wear our hood and gloves outside and why we can't just wear a normal hat."

Dreams of ordinary moments.

When asked about her biggest dream, Amielle's answer is simple: "Going out with my friends to the city, or, going out and not having to worry about my skin exposure," she said. "Just having fun and being able to go out at any time of the day."

Hope is on horizon for the Walkers though.

Amielle and Taya Walker are navigating the rare diagnosis together. Image: Supplied.

They're now planning to build a covered outdoor area in their backyard — a space where the girls can experience the feeling of being outside safely, even during the day.

For four years, they've kept their back doors closed. This simple modification would allow them to finally open their home to fresh air again.

"Taya can have her birthday party out there and she can wear a dress for her whole party, and she's very excited about that," Yvette said. At her last birthday party, held indoors, Taya faced an impossible choice when friends ran outside: change into protective gear or stay inside in her dress. She chose to stay inside.

The covered space would also mean Amielle could train for basketball — a sport she excels at — at any hour, and both girls could invite friends over without the complex logistics that currently make playdates a challenge.

As Australia heads into another scorching summer, the Walker sisters continue their unique relationship with daylight — finding joy in the margins, freedom in the shadows, and hope in the knowledge that their story might help others understand that sometimes the most ordinary dreams are the most extraordinary.

A fundriaser has been started to support the Walker family's backyard modification project. You can contribute here.

Feature image: Supplied.