Philip Bay: Family’s desperate $280k bid to give daughters a backyard to just be kids

A family in Sydney’s south is battling to let the light in, fundraising for a safe outdoor space for their girls forced indoors by a one-in-a-million genetic condition.

Phillip Bay locals 12-year-old Amielle and 7-year-old Taya Walker have a rare skin condition which keeps them covered up or indoors. Picture: Supplied

For two sisters in Sydney’s south east, sunlight is a rare privilege.

Despite loving sport and dance, 12-year-old Amielle and 7-year-old Taya Walker must spend the vast majority of their time indoors due to a rare condition which makes them severely vulnerable to the sun.

Their risk of non-melanoma skin cancer is 10,000 times that of the general population, and their melanoma risk is heightened by a factor of 2000.

If Amielle and Taya spend any amount of time outside without every inch of skin being protected, their skin will erupt in severe burns and they are at risk of permanent damage to their DNA.

The girls’ mother, Yvette Walker, said in the heat of summer after just five minutes of exposure “we would be heading towards significant burns”.

Amielle and Taya Walker must spend the vast majority of their time indoors due to a rare condition which makes them severely vulnerable to the sun. Picture: Supplied

Amielle Walker playing basketball. Picture: Supplied

“We’ve been told that any amount can damage their DNA and it won’t repair,” she said.

“Our dermatologist continues to come back with the same answer, which is no amount (of sun) is safe.”

Amielle and Taya Walker playing on the beach at night when they were younger.

The girls live with a one-in-a-million genetic disorder called Xeroderma Pigmentosum (XP), which means their DNA is unable to repair itself after exposure to UV light.

Even if the girls don’t develop a burn, any sun damage to their DNA would be invisible and permanent.

Dermatologist Deshan Sebaratnam leads the Genetic Dermatology clinic at Liverpool Hospital and said this damage accumulates over time, drastically increasing the likelihood of skin cancers.

“If you walk out into the sun, you’ll get damage to your DNA but your body fixes it,” Professor Sebaratnam said.

“XP patients don’t have certain genes so they can’t repair that DNA.”

Professor Sebaratnam said he has treated an XP patient who developed skin cancer at as young as two years old, with eye problems and burns as common issues and some experiencing neurological symptoms.

“There would be a handful of patients in all of Australia,” he said.

Despite these challenges, the young girls have active social lives and hobbies. Their primary school has been retrofitted to make the windows more suitable for them, they have hoods to wear to walk outside and play sports, and their family has been fundraising to build a safe backyard area for them.

Yvette Walker measuring UV levels. Picture: Supplied

“Ami is excited to go out after school, move her body and exercise,” Ms Walker said.

“She’s usually having to wait for sunset for that.”

“It’s now four and a half years that we’ve been waiting (to build), each summer has felt so heavy knowing it wasn’t going to happen. We didn’t really have the finances in place but couldn’t keep waiting.”

The Walker family has raised more than $100,000 so far to build an outdoor protected space at their home in Sydney's south east.

Amielle and Taya Walker must spend the vast majority of their time indoors due to a rare condition which makes them severely vulnerable to the sun. Picture: Supplied

The family has raised more than $100,000 so far and taken out loans to build an outdoor protected space at their Phillip Bay home, with the UV structure expected to come to about $280,000 in total.

The backyard space is set to be approximately seven metres wide and ten metres long, with UV blinds and treated glass to ensure the area is safe for the girls to enjoy without full-body protection.

The Walker family has raised more than $100,000 so far to build an outdoor protected space at their home in Sydney's south east.

“Taya is excited about being able to wear a dress to her own birthday party,” Ms Walker said.

“For her to do that safely is not something she’d be able to do otherwise.”

UV protection in the family’s backyard would also give them the chance to open up doors and windows and feel the breeze in their home.

Ms Walker said the structure will give the girls more freedom, as so much of their lives are spent indoors.

“I go and sit outside for a moment and take a deep breath and Taya puts her face up to the glass and calls me back inside,” Ms Walker said.

“They’ve got so many things planned, outdoor movie nights or even matinees. It’s just going to be transformative.”

Originally published as Philip Bay: Family’s desperate $280k bid to give daughters a backyard to just be kids