A simple play in the backyard can be a dangerous experience for Amielle Walker.
The Sydney youngster, 8, has been diagnosed with a rare genetic disorder known as Xeroderma Pigmentosum – or XP – which sees her suffer from extreme sensitivity to UV rays from sunlight.
Her sibling Taya, 3, is displaying similar early symptoms and all signs are pointing to her having the same disorder.
Mother of three Yvette Walker told Daily Mail Australia she first knew something was wrong when her little girl suffered severe burns from a casual day playing outside.
It means life’s simple pleasures such as heading to the beach during the middle of the day or going to the local park in glorious sunshine are out of the question for the siblings.
Sydney siblings Amie and Taya Walker (pictured right) are living with xeroderma pigmentosum, which sees the girls suffer extreme sensitivity to UV rays from sunlight
After a trip to the local park – and largely staying in the shade, Amie Walker (pictured) soon suffered horrific burns due to UV exposure from the sun
When the girls do leave their house – for school and other essential activities – they require beekeeper-type hat wear, loads of sunscreen and protective clothing from head to toe.
The family also carry a UV light detector at all times.
‘Its been a tough few months since the diagnosis (of Amie) was confirmed.. plenty of tears have been shed,’ their mother said.
‘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.
‘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 most likely Taya too, are both missing a vital part of their DNA which repairs damaged skin cells in the body after exposure to UV radiation in sunlight.
This means their damaged skin doesn’t repair in the same way other people’s skin does naturally.
It leaves the girls highly susceptible to skin cancer and needing to get melanoma checks three times a month.
Amie Walker and her sister Taya (pictured) are living with a rare genetic disorder known as Xeroderma Pigmentosum – or XP
Taya Walker (pictured) after she was burnt following a day at the beach in Sydney before her family learned of her condition
The rare disorder means both Walker girls can’t be exposed to sunlight at any time
What is Xeroderma Pigmentosum?
- Xeroderma pigmentosum, more commonly known as XP, is an inherited condition characterised by an extreme sensitivity to ultraviolet (UV) rays from sunlight
- This condition mostly affects the eyes and areas of skin exposed to the sun
- There is no known cure, but symptoms can be managed
- People with XP 10,000 times more likely to get skin cancer than other people (and often from an early age)
- They often battle other cancers due to mutated skin cells spreading in their bodies
- May have significantly reduced life expectancy
- Can experience other complications including blindness, deafness, loss of cognitive function, and brain damage (around 20 per cent of XP patients).
‘Amie understands what is going on…she gets frustrated as she is a very active girl,’ her mother added.
‘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.’
Yvette added Amie’s local public school in Sydney’s south-east have been ‘fantastic’ after becoming aware of her unique condition.
‘It is why awareness and funding are so important,’ she said.
‘It was also a relief after (Sydney based) dermatologist doctor Andrew Ming confirmed the condition, from that moment on, we started preparing for life with XP.
‘I know of five or six other people across Australia who have the same condition, we also know we are going to face tough days ahead, so our aim is to make life as good as we can for Amie and Taya.’
Short term, the family also plan to make their suburban backyard a ‘solar fortress’ to provide a sense of normality for the girls with a UV safe cover.
A GoFundMe page has been established to assist the family with ongoing costs.