Haláláig naponta fényképezi magát a gyógyíthatatlan huszonéves, komoly a célja vele

El akarja érni, hogy legálissá váljon az eutanázia. 

Holly Warland egy 27 éves, ausztrál lány, akit még 11 éves korában diagnosztizáltak: végzetes és gyógyíthatatlan izomsorvadásban (végtagövi izomdisztópia) szenved. Ez azt jelenti, hogy nyaktól lefelé a testének összes izma folyamatosan válik mozgásképtelenné. Holly ezért egyre több ágynyugalomra és ápolásra szorul.

A lánynak PhD-tanulmányait és imádott szakmáját, a tanítást is abba kellett hagynia. Konferenciákon tartott előadást, orvosi tanulmánycikkeket írt – ennek is mind vége.

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This is a throwback photo to my happiest time in academia. It was around 2013 and I'd just finished my Honors degree in Psychology. My thesis findings were really interesting so a lot of people and media wanted to talk to me. It was great. I felt respected for my hard work and that my MD had nothing to do with this success, it was purely my hard work. This photo was of me in my only professional clothes I had just before I presented my findings at a conference. I've always been comfortable public speaking so I was very excited. Now that I'm bed bound and haven't even picked up a book in the last few months, I'm so glad I peaked early and achieved a lot of my goals before my body turned on me. I often forget that I have an honors degree (and half a PhD haha!). That's pretty damn impressive. I did fit a lot of hard work and achievements into my life and that can never be taken away, regardless of how sick I might become. (If you're a nerd and would like to know about my research, just Google 'Holly Warland Autism' and there are a few reports on my findings)

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Úgy döntött azonban, hogy végzetes betegségét kihasználja egy igen fontos célért: a legális eutanázia bevezetéséért.

Ezért elkezdte naponta fotóztatni önmagát fényképész partnerével, és a teljes leépülési folyamatot közzéteszi az Instagramján.

A fontos ügyért való kampányolás mellett természetesen mások gyógyítására is gyűjtött már pénzt a képei ismertségét kihasználva.

“Luke legjobb és legrosszabb pillanataimban is elkap; előkelő vacsora közben, majd aztán a zuhany alatt hányva. Semmi sincs cukormázba borítva. Világszerte több ezer embert értem el, és megkaptam a lehetőséget, hogy a szívemhez közel álló ügyért álljak ki.”

– fogalmaz Holly, aki sokszor még a megrázóbb képein is grimaszokat vág, mert saját elmondása szerint is világéletében igyekezett humorral kezelni mindent.

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I hadn't left the house in a month but today was my monthly doctor appointment so I made an effort and wore my fantastic @broadcity shirt. I had to have a difficult conversation with my doctor about how I'm petrified of becoming addicted to painkillers but need to increase my dosage due to my dip in strength and mobility now. I shed a few tears and he calmly explained that because of my condition, I was only going to get worse and there's no possible treatment so I am kind of allowed to become addicted because there's essentially nothing to lose. Of course he said it in a more professional way, he wasn't advocating pill addiction! It was a tiring visit and I was sore, and quite sad. This was until Luke helped me off the table and one of my adhesive bra cups (as featured in pic 2) just tumbled right out of my shirt. It landed with a plop on the floor and we all cracked up. I don't believe in silver linings, but it definitely lightened the mood. Do boobs solve everything? @ilanusglazer @abbijacobson #boobs #doctor #pain #addiction #disability #awesometshirt #broadcity

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Sometimes you catch photos of yourself and realise how sick/fat/thin/old/different you look. I was trying to see how oily my hair looked (selfies have replaced mirrors now) instead I saw Skeletor looking back at me. I have lost some weight lately. Completely unintentionally, but it's starting to show and I'm starting to get the strung out junkie look. I HATE looking sick. I haven't accepted that I'm sick yet. My brain still thinks tomorrow I'll get up out of bed and head to university or out to lunch with my mum. But everyday it's getting clearer that my body is weakening. If you don't have an unpredictable degenerative disease it's hard to explain, but sometimes you just feel a sudden loss of strength, health, or ability. Over the past few months I've definitely had a dip. I can go years without one and then it will hit. I'd say the last big one was when I became too weak to teach. As for how it affects me mentally? All I can do is adapt adapt and adapt. #sick #skinny #health #musculardystrophy #mentalhealth #adapt

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One thing that everyone with a disability needs is support. I'm so lucky that I have a great family and parents because life would be so much more difficult if I were without this net. They're so great that they've set up a room for me in the family home (I moved out in Oct 2015) with an adjustable bed and everything I need. Once a fortnight I'll stay the night there and catch up with my family and Luke has the night off. This is the most important part for me. I feel so guilty so often about how much time and energy Luke spends on looking after me physically and emotionally. This night away makes me relieved that he can have a break and not have to have me in the back of his mind. No interruptions to his gaming, sleeping, etc. Carers need breaks. He needs to be a normal young guy sometimes. So now I get sleepovers and Rugby (the dog) cuddles!

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