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Two young Australian sisters live with xeroderma pigmentosum, a one-in-a-million condition that causes severe burns from even seconds of UV light exposure. Their family is building a UV-safe backyard sanctuary to give the girls the freedom to play outdoors, but they need community support to complete the project before Christmas. Link to their GoFundMe: https://www.gofundme.com/f/help-ami-taya-walker-play-and-stay-safe | 7NEWS Sydney
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Two young Australian sisters live with xeroderma pigmentosum, a one-in-a-million condition that causes severe burns from even seconds of UV light exposure. Their family is building a UV-safe backyard sanctuary to give the girls the freedom to play outdoors, but they need community support to complete the project before Christmas. Link to their GoFundMe: https://www.gofundme.com/f/help-ami-taya-walker-play-and-stay-safe | 7NEWS Sydney
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Olympe souffre du xeroderma pigmentosum, aussi appelé la maladie des « enfants de la lune ». Ne pouvant pas être exposée aux rayons UV ni au soleil, elle vient sur le plateau avec sa maman pour raconter comment elle vit avec cette maladie au quotidien. ▶ Pour voir plus de cet extrait de #CCA : https://bit.ly/CCA-Lune-Olympe | Ça commence aujourd'hui
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