For two young sisters from New South Wales, the simple childhood joy of playing outside in the sunshine is a dangerous impossibility. Amielle Walker, aged 12, and her seven-year-old sister Taya, are battling one of the world's rarest genetic conditions, and their family is racing against the clock to build them a safe outdoor haven.
A Life in the Shadows
The Walker sisters live with xeroderma pigmentosum (XP), an extremely rare condition that affects roughly one in a million people. For Amielle and Taya, exposure to daylight is hazardous. Even a few seconds of UV light can cause severe burns to their skin and permanent damage to their eyes. As a result, the girls have spent almost their entire lives confined indoors, missing out on the outdoor play that defines a typical Australian childhood.
"It's just unfathomable, really. Basically, every part of life is harder for them," said their mother, Yvette Walker. The condition has no cure and no effective treatment, leaving the family to manage the immense daily challenges on their own.
The Dream of a UV-Safe Sanctuary
Determined to give their daughters a taste of normalcy, parents Yvette and Nick Walker embarked on an ambitious project four years ago: to construct a completely UV-safe sanctuary in their own backyard. This specialised structure is designed with protective blinds, a special roof, and real grass, creating a secure environment where the girls can play, socialise with friends, and experience the outdoors without the constant fear of getting hurt.
"We just want to give them a normal childhood that any other child would experience," their father Nick explained. For Amielle and Taya, this project represents nothing short of freedom. "It's going to be really fun. We'll get to go out with our friends. It's going to be life-changing," Amielle shared. Her younger sister Taya added, "Instead of just staying inside and playing inside and just being bored inside, we can actually go outside and play."
A Community Call for Help
After four long years of effort, the family's dream is within sight but remains unfinished. The specialised materials and construction required for a truly UV-proof space are expensive, and the family's resources have been stretched to their limit. With the goal of completing the sanctuary by Christmas, they are now reaching out to the community for support.
"Any support financially that people will be willing to give us to help us make this dream a reality," Nick said. The family has set up a GoFundMe page where people can learn more about their story and contribute to giving Amielle and Taya the childhood they've never had, just in time for the holidays.
