For many kids in Australia, summer is about enjoying the sun—backyard cricket, beach outings, and pool parties. But for sisters Amielle, 12, and Taya, 7, summer poses a serious threat.
They have Xeroderma Pigmentosum (XP), a rare genetic condition that prevents them from repairing DNA damage caused by sunlight. Just a little UV exposure can lead to severe burns and increase their risk of skin cancer by up to 10,000 times.
As summer approaches, their mother, Yvette Walker, shares the heart-wrenching realities they face. “It’s sad and confronting,” she says. The family knows just six other families with XP in Australia, highlighting how rare this condition is.
Amielle was diagnosed at seven, and by then, her hands showed sun damage typical of a much older person. Taya was diagnosed at two and has never known a life without strict sun protection. “There’s anxiety… because she knows it leads to cancer,” Yvette reflects.
The condition is caused by a double recessive genetic mutation. Both parents are carriers, though it had never appeared in their families before. Initially, doctors dismissed their concerns about the girls returning from school with burns, but eventually, the family pushed for answers and received the life-changing diagnosis.
“When we first told Amielle, she cried and withdrew,” Yvette recalls. The weight of their new reality was heavy. They even had to pull Amielle from school for six weeks. “It feels like we’re grieving what we lost,” Yvette explains.
Every day outdoors requires complete sun protection. The girls wear UV-blocking hats, specialized clothing, gloves, and sunscreen—each item meticulously checked for damage. Their school has installed UV-filtered features to help keep them safe, but even with those measures, they miss out on events when the heat is too intense.
Despite these challenges, the Walkers strive to give their daughters as normal a childhood as possible. Amielle participated in her school swimming carnival in a full-body suit designed for UV protection, and she earned a spot on the netball team. Yet on particularly hot days, she still has to sit out.
Planning outings requires immense effort. Yvette often checks every detail—from facilities to food safety at camps. While invitations to events have dwindled due to the complexities of managing sunlight exposure, some friends have adapted, organizing safer evening gatherings to include Amielle.
A council-approved project looms big on the horizon: a UV-safe backyard that allows the girls to play outdoors during the day. This structure is designed to block UV light completely, ensuring a safe play area. However, the project costs about $560,000, which is a steep financial burden. Their funding application to the NDIS was denied, leaving the family frustrated and exhausted yet determined to press on.
“We’ve faced so many setbacks,” Yvette shares. “But this would transform their lives.” The completion is scheduled before Christmas, promising a holiday spent outside for the first time.
“We’re excited to finally have airflow,” Taya says, looking forward to playing freely. Yvette believes there is much to learn from her daughters’ resilience and positivity in the face of such challenges.
A friend has started a GoFundMe to help with the financial demands of the backyard project. Yvette hopes their story raises awareness about living with XP, emphasizing education and understanding for the families dealing with this condition.
For more information or to help, read more about Amielle and Taya’s journey on their GoFundMe page here.
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Lifestyle,children,genetics,skin,sun
