SISTERS Amielle, 8, and Taya, 3 from Sydney, Australia both have Xeroderma Pigmentosum, a very rare condition that means if the girls are exposed to sunlight their skin can be burnt very badly. Their parents Nick and Yvette explained to Truly how serious the condition is: “They’re 10,000 times more likely to get skin cancer than you or I and they’re 2000 times more likely to get other cancers as their cells don’t repair at a DNA level.” Amielle’s first burn happened when she was just three and a half months old, initially doctors said that she just had sensitive skin and it wasn’t until Amielle was 7 that she was finally diagnosed with XP. After the diagnosis the family took a DNA test and discovered that Taya also has the rare condition. The girl’s parents, Nick and Yvette have to take a number of safety measures when the sisters go outside. To ensure they are not exposed to any UV light at all the girls have to wear a thick layer of sunblock, gloves and a protective visor before leaving the house. This sometimes makes socialising tricky for Amielle and Taya. Yvette told Truly: “It makes you feel sad when they can’t be involved in social situations or just pop down to the beach for a quick swim. It’s not just a pop down for us, it takes quite a bit of preparation to get out of the door.” Nick and Yvette hope to raise money via GoFundMe to build a covered play area in their garden so the girls can have fun outside freely. Due to their condition Amielle and Taya can only visit the beach at night to be completely safe. Truly visited the family during one of their evening trips to their local beach to see the sisters enjoy the seaside together. Nick explained how important these trips to the beach are for the family: “When you see the girls playing together at sunset without the gear on it’s priceless.”
