\u201cIt\u2019s sad and confronting,\u201d their mother Yvette Walker told news.com.au during an emotional interview.<\/p>\n
\u201cNo amount of UV is safe for them.\u201d<\/p>\n
Even the smallest amount of UV causes severe burns. Photo \/ Gofundme<\/p>\n
Doctors told the family they had nothing to worry about. <\/p>\n
XP is so rare that the Walkers only know of six other families in Australia with the condition.<\/p>\n
Amielle was diagnosed at 7, and by the time doctors confirmed it, the damage on her hands already resembled what would normally be seen on a 40-year-old.<\/p>\n
Taya was diagnosed at 2 years old and doesn\u2019t remember a world without these boundaries.<\/p>\n
The doctors initially told the family they had nothing to worry about. Photo \/ Gofundme<\/p>\n
\u201cThere\u2019s an anxiety there for Ami because she knows it leads to cancer,\u201d Yvette Walker said.<\/p>\n
The disorder is genetic \u2013 a double recessive mutation causing a critical DNA process to fail.<\/p>\n
Both parents are carriers, even though it hasn\u2019t appeared in their family before.<\/p>\n
Every day, the girls would return from school with major burns, particularly on their faces and lips.<\/p>\n
When they decided to see a doctor, their concerns were initially dismissed.<\/p>\n
\u201cThey told us it was fine and there was nothing to worry about,\u201d Walker said.<\/p>\n
After pushing for answers, the family was finally given a diagnosis, but it came at the cost of their lives \u201cshrinking massively\u201d.<\/p>\n
Any exposure to UV is dangerous to the girls. Photo \/ Gofundme<\/p>\n
Any exposure to the UV results in a high degree of burns.<\/p>\n
\u201cWhen we first told Ami, she put herself into bed and cried. There was a lot of resistance to everything we needed to implement,\u201d Walker said.<\/p>\n
The news was life-changing for Walker and their father, Nick Walker, yet alone 7-year-old Ami, who just wanted to play in the sun with her friends.<\/p>\n
\u201cWe had to take her out of school for six weeks,\u201d Yvette Walker said.<\/p>\n
\u201cWe do far less than we did before and that\u2019s a grief.<\/p>\n
\u201cWe just hit these little grief pockets now and again.\u201d<\/p>\n
A normal day outside demands full-body protection.<\/p>\n
A UV-blocking hat with German-made plastic face shields, gloves from the US, UV-rated tops and pants, thick socks, shoes and sunscreen.<\/p>\n
If exposed to UV, their risk of cancer increases by 10,000 times.<\/p>\n
The girls have to be fully protected against UV when they go outside. Photo \/ Gofundme<\/p>\n
The family is hoping to raise awareness about the one-in-a-million condition.<\/p>\n
Every item is monitored for rips or holes, and every outing must be planned down to the minute.<\/p>\n
The girls\u2019 school has been refitted with UV-filtered doors and windows and teachers co-ordinate daily to ensure precautions are being taken.<\/p>\n
Even then, the girls will often miss out when the heat becomes too intense.<\/p>\n
But the Walkers push hard to ensure the girls still get the chance to be \u201cnormal\u201d kids.<\/p>\n
When Amielle wanted to compete in her school swimming carnival, her parents made it happen.<\/p>\n
She donned a full-length body suit, gloves, thick socks, a sports balaclava and full-face snorkel fitted with UV film.<\/p>\n
\u201cIt was astounding,\u201d Walker said.<\/p>\n
\u201cWe told her that if she wanted to do it, we would make it happen.\u201d<\/p>\n
She\u2019s also made the PSSA netball team \u2013 wearing a sports hood that connects under her arms \u2013 but still sits out on hot days.<\/p>\n
They often have to choose between sleep, or enjoying the outdoors at night.<\/p>\n
Year 6 camp in Canberra required an almost military level of planning.<\/p>\n
\u201cWe checked every facility, every toilet and every meal situation,\u201d Walker said.<\/p>\n
Birthday parties, playgrounds and simple family outings come with layers of logistics that most parents can barely imagine.<\/p>\n
Invitations have dropped off and, as much as it hurts, Walker said she understands why.<\/p>\n
\u201cIt comes at a cost for a parent to have to consider,\u201d she said.<\/p>\n
Some of Amielle\u2019s closest friends now host night-time movie nights, torch games and roast smores over fires so she can join in safely.<\/p>\n
\u201cThose beautiful modifications mean so much,\u201d Walker said.<\/p>\n
The Walkers\u2019 biggest project \u2013 and highest hope \u2013 is a council-approved UV-safe backyard.<\/p>\n
It\u2019s a fully enclosed space that would finally allow the girls to play outside during the day.<\/p>\n
It\u2019s not just shade; it\u2019s a precision-engineered structure where every millimetre must block UV. No gaps, no leaks, no risk.<\/p>\n
They have spent most of their lives indoors.<\/p>\n
The family wants to build a UV-safe play area for their children. Photo \/ Gofundme<\/p>\n
Despite the many hurdles, Nick and Yvette Walker have worked hard to give the girls a normal childhood.<\/p>\n
\u201cIt\u2019s so meticously planned. It\u2019s surreal,\u201d Yvette Walker said.<\/p>\n
The cost is enormous, with the family looking at A$560,000 ($643,000) for the full build, with more than A$100,000 for the roof alone.<\/p>\n
Australia\u2019s National Disability Insurance Scheme (NDIS) rejected their funding application, suggesting the girls could use a \u201clocal playground\u201d instead. The family is taking the decision to the tribunal.<\/p>\n
The NDIS has been contacted for comment.<\/p>\n
\u201cWe\u2019ve had so many knock-backs to get where we are today,\u201d Walker said.<\/p>\n
\u201cWe\u2019re exhausted. But this would change their lives.\u201d<\/p>\n
The build is scheduled to be finished by December 19 and, if all goes to plan it will be the first Christmas the sisters will spend outside.<\/p>\n
When news.com.au spoke to the sisters, they were overjoyed about the new backyard.<\/p>\n
\u2018It\u2019s the little things\u2019<\/p>\n
Little Taya said she was most excited to sunbathe and wear her favourite dresses outside.<\/p>\n
\u201cIt\u2019s the little things,\u201d Walker said.<\/p>\n
They will finally experience normalcy with a specially designed backyard build.<\/p>\n
\u201cWe\u2019ll be able to play outside and have the doors open. We\u2019ll even have airflow throughout the house.\u201d<\/p>\n
Walker said she believed that people have a lot to learn from her daughters, who are immensely brave and positive given the situation they\u2019ve been presented.<\/p>\n
A friend of the Walker family has set up a GoFundMe, in the hopes of alleviating some financial pressure as they navigate their new build.<\/p>\n
\u201cWe\u2019re going public for awareness, education and fundraising, in the hope that people get a bit of an understanding about living a day in the life in our shoes,\u201d Walker said.<\/p>\n","protected":false},"excerpt":{"rendered":"\u201cIt\u2019s sad and confronting,\u201d their mother Yvette Walker told news.com.au during an emotional interview. \u201cNo amount of UV…\n","protected":false},"author":2,"featured_media":172113,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3],"tags":[88986,2937,32322,7972,1239,16558,299,1888,24267,42,1899,2190,17768,3025,43,1118,11324,2954,5198,96261,24809,14625,182,1734,40,38,41,39,15401,111169,102],"class_list":["post-172112","post","type-post","status-publish","format-standard","has-post-thumbnail","category-headlines","tag-afternoons","tag-aussie","tag-backyard","tag-beach","tag-condition","tag-cricket","tag-dream","tag-first","tag-freedom","tag-headlines","tag-kids","tag-long","tag-means","tag-most","tag-news","tag-of","tag-outdoors","tag-parties","tag-pool","tag-safely","tag-sisters","tag-summer","tag-sun","tag-sydney","tag-top-news","tag-top-stories","tag-topnews","tag-topstories","tag-trips","tag-ultrarare","tag-with"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/172112","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/comments?post=172112"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/172112\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/172113"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=172112"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=172112"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=172112"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}