Two young sisters living with an extraordinarily rare genetic condition that makes sunlight a toxic threat have launched a heartfelt public appeal for help. Amielle, 12, and Taya Walker, 7, from Phillip Bay in Sydney, were born with Xeroderma Pigmentosum (XP), a disorder affecting roughly one in a million people worldwide.
A Life Transformed by Diagnosis
For years, their mother, Yvette Walker, knew something was seriously wrong, despite doctors initially dismissing her concerns as mere sensitive skin. "I knew that wasn't the case," she insisted. The family's life was upended in December 2020 when they returned from holiday to find Amielle's face severely burnt. A new dermatologist finally provided the devastating diagnosis: XP.
This inherited multi-system disorder means ultraviolet (UV) rays are dangerously toxic to the girls' skin, increasing their risk of developing skin cancers like melanoma by 10,000-fold. It also carries a significant risk of progressive neurological damage. "The diagnosis was the start of a massive upside-down change in our life," Yvette explained.
The Daily Struggle for Safety
Now, leaving the house requires a meticulous routine. The sisters must wear multiple layers of protective clothing, including long sleeves, gloves, and a plastic hood with a UV filter screen. Their home, cars, and school windows have been fitted with special UV filters. The condition has also shrunk their social circle, as some parents feel anxious about caring for the girls.
The Walker family considered moving from Australia but realised UV exposure was a global challenge. With their 15-year-old son Quinn settled, they decided to stay and adapt. They found solace in a global Facebook community for XP sufferers, which has only 120 members, including just six other Australian families.
A £280,000 Dream for a Safe Haven
To give Amielle and Taya a chance at a more normal childhood, the family is now fundraising to build a council-approved protective structure in their backyard. The planned sanctuary, featuring fabric blinds and UV-resistant glass, is estimated to cost $280,000 (approximately £280,000).
A dedicated GoFundMe campaign has so far raised over $102,000 towards a $250,000 goal. "You can't stop XP from happening," Yvette said, "but if you're in a better state when it does happen... that structure in the garden is the best we can do for our kids." The family also hopes to make further UV-safe modifications to their garage and create a protected rumpus area.
For the Walker sisters, this secure outdoor space isn't a luxury—it's a vital step towards health, fitness, and a fragment of the freedom every child deserves.
