A simple walk to the park or a trip to the beach during a beautiful sunny day can be dangerous for 8-year-old Amielle Walker.
The little girl from Sydney has been diagnosed with Xeroderma Pigmentosum or XP, a rare genetic disorder characterized by an extreme sensitivity to ultraviolet rays from the sun.
Her younger sister, 3-year-old Taya, is also showing signs and symptoms of the same condition.
Their mother, Yvette Walker, told Daily Mail that she first noticed something was definitely wrong when Amielle suffered burns after playing outside.
“Its been a tough few months since the diagnosis (of Amie) was confirmed.. plenty of tears have been shed,” she expressed.
“My husband and I are both (gene) carriers… and XP is diagnosed to roughly one in a million people in Australia – and has no cure.”
The mother of three continued: “We knew something was amiss when Amie was severely burnt as a toddler after being outside one day, but quite a few doctors we spoke to hadn’t come across the condition before, it is unusual.
“We want to spread the word about XP, the more people know about it, the better.”
Amielle and Taya are both missing an important part of their DNA which repairs damaged skin cells after exposure to UV rays. Because of this, their damaged skin cannot repair in the same way normal skin does, leaving them highly susceptible to skin cancer.
“Amie understands what is going on…she gets frustrated as she is a very active girl,” Yvette shared. “It is heartbreaking at times, she loves to swim, bodyboard at the beach and play soccer.
“Soccer has been tough, we take Amie to training during the week (at night) but then she can’t play games on the weekend. When Amie asks why can’t she wear a dress like her friends, we find ourselves choking back tears.
“We have to keep coming up with ways to maximise their lives, which requires thinking outside the box in terms of daily activities to keep them occupied.”
The mother said that her daughter’s local public school has been ‘fantastic’ after becoming aware of Amie’s rare condition.
“It is why awareness and funding are so important,” she added.
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