Introduction to Xeroderma Pigmentosum
For most Australian children, summer means freedom – long afternoons in the sun, cricket in the backyard, trips to the beach and pool parties. However, for sisters Amielle, 12, and Taya, 7, sunlight is life-threatening. The Sydney girls live with xeroderma pigmentosum (XP), an incredibly rare genetic disorder that leaves them unable to repair DNA damage caused by UV radiation.
The Risks of XP
Even the slightest exposure to sunlight can cause severe burns and increases the risk of skin cancer by up to 10,000 times. They also have a 2,000-fold increased risk of eye surface cancer. As they prepare for their fifth summer since their diagnosis, the heat is already “unrelenting.” Their mother, Yvette, says, "It’s sad and confronting. No amount of UV radiation is safe for them."
Living with XP
XP is so rare that the Walkers know of only six other families in Australia with the disease. Amielle was diagnosed at the age of seven, and by the time doctors confirmed it, the damage to her hands was already similar to that normally seen in a 40-year-old. Taya was diagnosed at the age of two and cannot remember a world without these boundaries. The disorder is genetic – a double recessive mutation that causes a crucial DNA process to fail.
Daily Life with XP
Every day, the girls returned from school with severe burns, particularly on their faces and lips. When they decided to see a doctor, their concerns were initially dismissed. After pushing for answers, the family was eventually granted some closure, but at the cost of their lives "shrinking massively." A normal day outside requires full body protection, including a UV-blocking hat with a plastic face shield, gloves, UV-protected tops and pants, thick socks, shoes, and sunscreen.
School and Social Life
The girls’ school has been equipped with UV-filtered doors and windows, and teachers coordinate daily to ensure precautions are taken. Even then, they often miss out when the heat gets too intense. But the Walkers do everything they can to ensure that the girls continue to have the chance to be “normal” children. When Amielle wanted to take part in her school’s swimming carnival, her parents made it possible. She wore a full body suit, gloves, thick socks, a sports balaclava, and a full face snorkel equipped with UV film.
Creating a Safe Outdoor Space
The Walkers’ biggest project – and greatest hope – is a council-approved UV-safe backyard. It is a completely enclosed space that finally allows the girls to play outside during the day. The costs are enormous: the family expects to spend $560,000 for the entire construction, including more than $100,000 for the roof alone. Construction is expected to be completed by December 19th, and if all goes according to plan, it will be the sisters’ first Christmas spent outside.
Raising Awareness and Support
A friend of the Walker family has set up a fundraising campaign in hopes of easing the financial pressure of dealing with their new building. Yvette believes that people can learn a lot from her daughters, who are extremely courageous and positive in the face of the situation presented to them. The family is committed to raising awareness, education, and fundraising in the hope that people will gain some understanding of how to have a day in their lives.
