ruth901
A life with moonshine sicknessFor these two sisters, every ray of sunlight is life-threatening
When every ray of sunshine becomes a danger.
Sun on the skin – a really nice feeling for most people. For Amielle (12) and Taya (8) from Australia, this can be life-threatening. The two sisters have the so-called moonshine disease: their skin is extremely sensitive to UV rays. You can see in the video how her family copes with everyday life and how her parents want to give the girls a nice, almost normal childhood despite everything.
Amielle and Taya are moonshine children: their special everyday life with the illness
It's a school morning like many other families. Except that for the Walkers from near Sydney, nothing happens quickly. Before Amielle and Taya can leave the house, their daily protective ritual begins: sunscreen, long clothing, gloves, a special hat. Because the two girls have the so-called moonlight disease. Even small amounts of UV radiation can seriously damage your skin. Your risk of developing skin cancer is increased many times overin certain types of skin cancer even up to 10,000 times.
Reading tip: Detect skin cancer early – why the ABCD rule is so important
The rare disease is medically called xeroderma pigmentosum, or XP for short. Those affected are extremely sensitive to UV light. This was evident in Amielle even as a baby. Her father remembers her first bad sunburn. At that time, her mother only sat with her in the shade under a tree for about half an hour. In the evening, Amielle's skin was glowing and her face was badly burned: “We took her to the emergency room. They thought it might be an allergic reaction to something.” Amielle wasn't diagnosed until she was seven years old. It later turns out that her little sister Taya is also affected.
The girls' lives therefore often take place indoors, behind specially darkened windows. Any way out is only possible with full protective clothing. Taya knows how quickly things can become dangerous: “If we're running outside or something and the hood suddenly just rides up and it's a really hot day, we'll immediately get sunburned.”
A protected garden gives the girls new freedom
Yvette and Nick Walker were already thinking about leaving the almost permanently sunny Australia. But they didn't want to tear their three children away from their everyday lives. Aside from that: Danger lurks everywhere – even in the shadows, even when the sun appears to have disappeared behind a cloud cover. You can't simply escape UV radiation.
For a long time, a UV value of zero is only guaranteed in a strictly darkened family home. But now even in the garden! This has been converted into a UV-safe area. Louvers let in wind and natural light, and the roof can open and close to allow rain to come through.
This special conversion of the garden, the tinted windows on the house and the cars has already cost the family more than half a million euros. They only did that with the help of one GoFundMe fundraising campaign done. But the garden isn't finished yet, so the family continues to collect donations. “We want to lay real grass, we want to make it a little more comfortable for the girls with even more equipment. I'm thinking maybe some water features. Taya would be happy with monkey bars or climbing equipment.” Because this way the girls at least get a bit of normality back.
Sources used: RTL, GoFundMe
