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"It was very quick": Children's entertainer dead at 29

<p dir="ltr">Beloved children’s entertainer Chelsie Whibley has died at the age of 29. </p> <p dir="ltr">The actress, best known for her roles in <em>Dani's House and Sadie J</em>, was open about her battle with cystic fibrosis which caused mucus to build up in her lungs and function at 25 per cent.</p> <p dir="ltr">Her heartbroken husband Glyn Whibley shared the devastating news in a lengthy facebook post saying how wrong it felt waking up with her not there. </p> <p dir="ltr">“I cannot put into words the heartbreak I am now feeling without you here,” he wrote. </p> <p dir="ltr">“Waking up without you by my side just feels so wrong and I’m waiting to realise that this is all just a terrible dream… but sadly I know it is not. </p> <p dir="ltr">“From the first time we met I knew that this day would come but I knew you were the one I wanted to spend my life with…and it has been an incredible life…one that I would not change for anything in the world.”</p> <p dir="ltr">Glyn thanked Chelsie for being his inspiration and for bringing happiness into his life saying he would forever treasure their memories together.</p> <p dir="ltr">“You were such an inspiration to me and so many others, with such vigour and determination to prove the doctors wrong and keep living on. </p> <p dir="ltr">“We have made so many memories together that I will treasure for the rest of my life and I thank you for choosing me to share your life with! </p> <p dir="ltr">“You have brought such happiness to me and you will never know the true amount of love I had for you!”</p> <p dir="ltr">Glyn wished there was a different way to help Chelsie with all the suffering but knows she’s at peace “looking down on us”.</p> <p dir="ltr">“You were the love of my life and my bestest friend and I am going to miss you so so much! </p> <p dir="ltr">“I’m sorry we didn’t get the chance to go away in our caravan more and enjoy more times together… but those trips we did take will be sacred to me! </p> <p dir="ltr">“You are my absolute world and you will always be in my heart!! </p> <p dir="ltr">“I will look after your mum and help her through this devastating time along with the rest of your family… but at long last you can finally rest in peace without fear and discomfort. </p> <p dir="ltr">“I love you so much baby and will never forget you!! I can’t believe I’m actually writing all this but I know you’re still with me in spirit looking after me!! </p> <p dir="ltr">“Until we meet again my beautiful wife… I love you!!!!!!!! X x x”</p> <p dir="ltr"><em>Image: Facebook</em></p>

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Calls for “life-changing” drug to be added to the PBS

<p><span style="font-weight: 400;">Cystic Fibrosis sufferers are calling for a “life-changing” drug to be added to the Pharmaceutical Benefits Scheme (PBS) so more of the 3500 affected Australians can access the treatment.</span></p> <p><span style="font-weight: 400;">Trikafta, produced by Vertex, currently costs Aussies $300,000 a year, meaning it is out of reach for most, including Ella Sawyer’s daughter, Evie.</span></p> <p><span style="font-weight: 400;">Diagnosed with the condition six weeks after she was born, Evie is now 12 and manages her condition with various medications, supplements, and twice-daily breathing exercises that help clear her chest.</span></p> <p><span style="font-weight: 400;">She is prone to long-lasting infections, takes enzymes with every meal and has increased calorie needs.</span></p> <p><span style="font-weight: 400;">Though Trikafta is already available and reimbursed in 17 countries, the decision to recommend its listing on the PBS has been deferred while experts on the Pharmaceutical Benefits Advisory Committee engage further with Vertex.</span></p> <p><span style="font-weight: 400;">In the meantime, the drug is available free of charge to critically ill patients with no other medicinal options, subject to specific eligibility criteria and on request by their doctor.</span></p> <p><span style="font-weight: 400;">Evie isn’t one of the 200 Australians who currently qualify, so she and her family are waiting for change.</span></p> <p><span style="font-weight: 400;">“It’s really, really frustrating that if you’re born with CF [cystic fibrosis], your access to the best treatment can be limited depending on where you are in the world,” her mother Ella Sawyer said.</span></p> <p><span style="font-weight: 400;">“If Ellie were to get the flu or another infection, she could have a big loss of lung function quite quickly whilst we wait for price negotiations to go on,” she added.</span></p> <p><span style="font-weight: 400;">“It’s just very frustrating when the quality of someone’s life comes down to a price.”</span></p> <p><span style="font-weight: 400;">The lack of access to Trikafta is putting lives at risk, according to Cystic Fibrosis Australia chief executive Nettie Burke.</span></p> <p><span style="font-weight: 400;">“We talk about having one of the greatest health systems here in the world,” Ms Burke said.</span></p> <p><span style="font-weight: 400;">“I think we do, but we can’t profess that when we can’t get drugs that have been in America for two years.”</span></p> <p><strong>Better quality of life</strong></p> <p><span style="font-weight: 400;">Ms Burke said recent trials of Trikafta have shown it to be a “life-changing” treatment.</span></p> <p><span style="font-weight: 400;">“People’s lives have definitely been extended, but their quality of life has been increased dramatically as well,” Ms Burke said.</span></p> <p><span style="font-weight: 400;">“One of the wonderful things we’ve seen from people overseas, or from those on trials, is that there’s a whole lot of babies being born.</span></p> <p><span style="font-weight: 400;">“Before, that wasn’t necessarily going to be the case because people were too unwell to have a family, but we’ve seen a big increase in babies.</span></p> <p><span style="font-weight: 400;">“So we know that Trikafta is working …. It’s incredible.”</span></p> <p><span style="font-weight: 400;">While negotiations continue between the PBAC and Vertex, Ms Burke and families of people with cystic fibrosis are calling for compassionate access to Trikafta to be given to all eligible patients.</span></p> <p><span style="font-weight: 400;">“We could save lives by getting access immediately,” Ms Burke said.</span></p> <p><span style="font-weight: 400;">The next update from the PBAC is due in August.</span></p> <p><em><span style="font-weight: 400;">Image: Nettie Burke / Twitter</span></em></p>

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Cystic fibrosis patient’s urgent plea for tissues as panic buying reaches new heights

<div class="post_body_wrapper"> <div class="post_body"> <div class="body_text "> <p>As coronavirus fears reach new heights, people around Australia are panic buying supplies to make sure they have what they need.</p> <p>Unfortunately, this leaves other people who are unable to buy in bulk left with nothing, as a Sydney man who suffers from cystic fibrosis discovered.</p> <p>“I’ve started a new lifesaving drug which makes me cough up a lot of mucus,” Peter Oxford told<span> </span><em><a rel="noopener noreferrer" href="https://www.news.com.au/finance/business/retail/cystic-fibrosis-patients-desperate-plea-for-tissues-amid-coronavirus-panic-buying/news-story/103f6e38d62d9d15d58f3f2373caecb6" target="_blank">news.com.au</a></em>.</p> <p>“I go through a box of tissues a day.”</p> <p>As he steadily ran out of tissues throughout the week, he was unable to find any more available in his local shops.</p> <p>He finished his last box at 3 am and begged for help by leaving a note in the lift to his apartment block.</p> <p>“Dear neighbours,” the note reads.</p> <p>“I can’t find tissues anywhere at our supermarkets, I have cystic fibrosis and need these on a daily basis.</p> <p>“I can swap you for a roll of toilet paper.</p> <p>“Is this what its (sic) come to?”</p> <blockquote class="twitter-tweet"> <p dir="ltr"><a href="https://twitter.com/hashtag/toiletpaper?src=hash&amp;ref_src=twsrc%5Etfw">#toiletpaper</a> <a href="https://twitter.com/hashtag/toiletpaperpanic?src=hash&amp;ref_src=twsrc%5Etfw">#toiletpaperpanic</a> <a href="https://twitter.com/hashtag/toiletpapergate?src=hash&amp;ref_src=twsrc%5Etfw">#toiletpapergate</a> <a href="https://twitter.com/hashtag/coronavirus?src=hash&amp;ref_src=twsrc%5Etfw">#coronavirus</a> <a href="https://twitter.com/hashtag/coronavirusaustralia?src=hash&amp;ref_src=twsrc%5Etfw">#coronavirusaustralia</a> <a href="https://twitter.com/hashtag/cysticfibrosis?src=hash&amp;ref_src=twsrc%5Etfw">#cysticfibrosis</a> <a href="https://twitter.com/BradHazzard?ref_src=twsrc%5Etfw">@BradHazzard</a> <a href="https://twitter.com/tracygrimshaw?ref_src=twsrc%5Etfw">@tracygrimshaw</a> <a href="https://twitter.com/sunriseon7?ref_src=twsrc%5Etfw">@sunriseon7</a> <a href="https://twitter.com/9NewsAUS?ref_src=twsrc%5Etfw">@9NewsAUS</a> <a href="https://twitter.com/Studio10au?ref_src=twsrc%5Etfw">@Studio10au</a> <a href="https://t.co/pANE5AFYgu">pic.twitter.com/pANE5AFYgu</a></p> — Peter Oxford (@Peter_Oxford) <a href="https://twitter.com/Peter_Oxford/status/1236464343509696512?ref_src=twsrc%5Etfw">March 8, 2020</a></blockquote> <p>As cystic fibrosis is a life-threatening respiratory disease, Oxford is helpful that his new treatment Symdeko could be the answer. He started the treatment 10 days ago and will be needing a lot of tissues for at least two weeks as his body grows accustomed to the new drug.</p> <p>“The last three nights I’ve been up coughing, didn’t get any sleep,</p> <p>“I also feel dizzy, nauseated and extra tired from the medication,” he explained.</p> <p>As Oxford was on the hunt for tissues, he went to shops four times a day and came back empty handed each time.</p> <p>“I went to grocery stores in Roseberry, Greensquare, Waterloo and Zetland. I even went to Bunnings … Nothing.”</p> <p>“I nearly want to cry. It’s causing me so much anxiety.”</p> <p>“People with disabilities are being disadvantaged with all this toilet paper buying,” he said.</p> <p>Oxford said he was able to get one box of tissues on Saturday, but the box was being sold for an inflated amount of $3.50 for 80 tissues.</p> <p>“Usually it’s a dollar for 200 tissues,” he said.</p> <p>“I don’t have family near me, I support myself,” he said. “The coronavirus panic is costing more money for people like myself.”</p> <p>He said that “something good came out of this as well” as a neighbour delivered a box of tissues to his door.</p> <p>“A lady just knocked on my door and said ‘here’s a box of tissues.</p> <p>“Her son had cystic Fibrosis so she understood.”</p> </div> </div> </div>

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Why huge crowds stormed the Sunrise set this morning

<p>The backdrop of Sunrise was crowded with people holding red balloons and signs covered in the word “Orkambi” this morning.</p> <p>Why? The group of more than 100 were advocating for the lifesaving cystic fibrosis drug Orkambi to be put on the government’s Pharmaceutical Benefits Scheme (PBS).</p> <p>Cystic fibrosis is a genetic disorder that causes fatal lung damage. Less than half of people with cystic fibrosis live to 40.</p> <p>Orkambi, which currently costs $250,000 a year, is the only drug available in Australia to treat the cause of the most common strain of cystic fibrosis.</p> <p>The Pharmaceutical Benefits Advisory Committee (PBAC) has voted against putting Orkambi on the scheme on three separate occasions. However, they have maintained it is the pharmaceutical company that’s making things difficult.</p> <p>In August 2017, a spokeswoman for the federal Department of Health said they had offered Vertex Pharmaceuticals $100 million in compensation but the company refused.</p> <p>Vertex said the government’s $100 million compensation offer is a 90 per cent discount on the drug and that their offer is placing them in an “impossible position”.</p> <blockquote style="background: #FFF; border: 0; border-radius: 3px; box-shadow: 0 0 1px 0 rgba(0,0,0,0.5),0 1px 10px 0 rgba(0,0,0,0.15); margin: 1px; max-width: 658px; padding: 0; width: calc(100% - 2px);" class="instagram-media"> <div style="padding: 8px;"> <div style="background: #F8F8F8; line-height: 0; margin-top: 40px; padding: 50.0% 0; text-align: center; width: 100%;"> <div style="background: url(data:image/png; base64,ivborw0kggoaaaansuheugaaacwaaaascamaaaapwqozaaaabgdbtueaalgpc/xhbqaaaafzukdcak7ohokaaaamuexurczmzpf399fx1+bm5mzy9amaaadisurbvdjlvzxbesmgces5/p8/t9furvcrmu73jwlzosgsiizurcjo/ad+eqjjb4hv8bft+idpqocx1wjosbfhh2xssxeiyn3uli/6mnree07uiwjev8ueowds88ly97kqytlijkktuybbruayvh5wohixmpi5we58ek028czwyuqdlkpg1bkb4nnm+veanfhqn1k4+gpt6ugqcvu2h2ovuif/gwufyy8owepdyzsa3avcqpvovvzzz2vtnn2wu8qzvjddeto90gsy9mvlqtgysy231mxry6i2ggqjrty0l8fxcxfcbbhwrsyyaaaaaelftksuqmcc); display: block; height: 44px; margin: 0 auto -44px; position: relative; top: -22px; width: 44px;"></div> </div> <p style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; line-height: 17px; margin-bottom: 0; margin-top: 8px; overflow: hidden; padding: 8px 0 7px; text-align: center; text-overflow: ellipsis; white-space: nowrap;"><a style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none;" href="https://www.instagram.com/p/BiK4O1aAzYR/" target="_blank">A post shared by Cystic Fibrosis Australia (@cfaustralia)</a> on Apr 29, 2018 at 2:47pm PDT</p> </div> </blockquote> <p>Sunrise hosts Natalie Barr and David Koch addressed the huge crowd standing behind them on the show.</p> <p>“We’ve got a lot of friends here at Brekky Central this morning,” Barr said.</p> <p>Sunrise shared the story of the Barrett family, whose three-year-old son Connor has cystic fibrosis and is already taking 20 different medications a day.</p> <p>His mum Taryn said the price of Orkambi was “crushing” for her and her family.</p> <p>“When he was first diagnosed we were told about this medicine, and that it’s a big game-changer, so to know that there’s a medicine that treats the underlying cause of the disease which has been developed, that’s really exciting for us,” Taryn <span style="text-decoration: underline;"><strong><a href="http://www.abc.net.au/news/2017-08-19/orkambi-medication-subsidy-setback-for-cystic-fibrosis-sufferers/8822218">told the ABC.</a></strong></span></p> <p>“But then to be told that no, Australians won’t be able to be given access to it, because it’s too expensive, that’s just crushing,” she said.</p> <p>Kochie implored on TV for Vertex to “come to the party”.</p> <p>“Another side of the story is to get something listed on the PBS, it has to be cost-effective and that drug company, according to the government, has to bring that price down. They’re charging a lot,” Koch said on air this morning.</p> <p>“This is a life-changing drug that helps a lot of people but the pharmaceutical companies have got to come to the party as well.</p> <p>“They just can’t bump up the prices and expect everyone to pay for it too,” he said.</p>

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Heartbreak for Perth couple with cystic fibrosis who met as children

<p><span>Kaila and Matt Maartensz first met as children when they were in the wards of Perth’s Princess Margaret Hospital being treated for cystic fibrosis.</span></p> <p><span>Their friendship developed over the years and when they grew into adults, they fell in love as they both battled lungs that continued to deteriorate.</span></p> <p><span>In 2013, Kaila, 32, had a lung transplant and the following year, Matt received his own new set of lungs.</span></p> <p><span>In the same week, he proposed to the love of his life and they married in 2015.</span></p> <p><span>But in December last year, Matt’s health suddenly worsened, and it wasn’t long before doctors delivered the devastating message that there was nothing more they could do.</span></p> <p><span>“We were told that because they didn’t know what was wrong with Matt, and because the treatment they were trying wasn’t working, there was nothing more they could do," Kaila, 32, told <a href="https://honey.nine.com.au/2018/02/19/12/22/perth-couple-with-cystic-fibrosis" target="_blank"><span style="text-decoration: underline;"><strong>9Honey</strong></span></a> in February.</span></p> <p><span>On March 31, Matt sadly passed away at home with Kaila by his side.</span></p> <p><span>"I don't even have the words to express how much I loved you, how much I'll miss you and how heartbroken I am right now," Kaila wrote on Instagram following his death.</span></p> <p><span>"I will love you forever my fierce dinosaur."</span></p> <blockquote style="background: #FFF; border: 0; border-radius: 3px; box-shadow: 0 0 1px 0 rgba(0,0,0,0.5),0 1px 10px 0 rgba(0,0,0,0.15); margin: 1px; max-width: 658px; padding: 0; width: calc(100% - 2px);" class="instagram-media"> <div style="padding: 8px;"> <div style="background: #F8F8F8; line-height: 0; margin-top: 40px; padding: 50.0% 0; text-align: center; width: 100%;"> <div style="background: url(data:image/png; base64,ivborw0kggoaaaansuheugaaacwaaaascamaaaapwqozaaaabgdbtueaalgpc/xhbqaaaafzukdcak7ohokaaaamuexurczmzpf399fx1+bm5mzy9amaaadisurbvdjlvzxbesmgces5/p8/t9furvcrmu73jwlzosgsiizurcjo/ad+eqjjb4hv8bft+idpqocx1wjosbfhh2xssxeiyn3uli/6mnree07uiwjev8ueowds88ly97kqytlijkktuybbruayvh5wohixmpi5we58ek028czwyuqdlkpg1bkb4nnm+veanfhqn1k4+gpt6ugqcvu2h2ovuif/gwufyy8owepdyzsa3avcqpvovvzzz2vtnn2wu8qzvjddeto90gsy9mvlqtgysy231mxry6i2ggqjrty0l8fxcxfcbbhwrsyyaaaaaelftksuqmcc); display: block; height: 44px; margin: 0 auto -44px; position: relative; top: -22px; width: 44px;"></div> </div> <p style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; line-height: 17px; margin-bottom: 0; margin-top: 8px; overflow: hidden; padding: 8px 0 7px; text-align: center; text-overflow: ellipsis; white-space: nowrap;"><a style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none;" href="https://www.instagram.com/p/Bg_LLKFg67C/" target="_blank">A post shared by Kaila Maartensz (@lovelydinosaur_)</a> on Mar 31, 2018 at 5:10am PDT</p> </div> </blockquote> <p style="text-align: center;"><span> </span></p> <p><span>Earlier this week, Kaila reflected on the lessons she had learnt about life after her tragic loss.</span></p> <p><span>"If you want to travel, do it! Do it while you can and book the nicer room and bid on the flight upgrade if it's possible to do so. But when you want to stay home do that too. If you want to sit on the couch all day watching Netflix, binge an entire series in a day," she wrote.</span></p> <p><span>"Laugh at yourself. But also don't be afraid to cry."</span></p> <p><span>"Stay up late and chat to your husband about every little thing on your mind. Don't worry about having to get up early. You can catch up on the sleep."</span></p> <p><span>"Enjoy the little moments. It's something you have to be mindful of doing but the little moments are some of the most special ones."</span></p>

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Meet the grandma who’s walking 420kms for her sick granddaughter

<p>Meet Susan Gascoine, the grandma walking 450km from Murray Bridge to Peace Park via Victor Harbour and the Fleurieu Peninsula to raise money for her granddaughter who has cystic fibrosis.</p> <p>This marks the second walk the 70-year-old grandmother has done in order to raise awareness and funds for the disease.</p> <p>Her nine and a half-year-old granddaughter, Tehya-Rose, was diagnosed with cystic fibrosis when she was just a few weeks old.</p> <p>Throughout Tehya-Rose’s life, Susan contemplated what she could do to make some measure of difference for the cystic fibrosis. She had initially dismissed the idea of the walks as she didn’t believe she could accomplish it. That is, until her late mother inspired her.</p> <p>When Susan’s mother was sick in hospital, someone commented how strong her legs were for a 90-year-old lady.</p> <p>“I was sitting there holding her hand when this happened, and I said, ‘That’s just because she loved to walk.’ Then, the very next thing that came out of my mouth was, ‘I’m going to do a walk for cystic fibrosis.’ It was almost as though she put that thought into my head. It started from there and that was almost two years ago,” Susan told Over60.</p> <p>Last year Susan’s walk from Renmark to Adelaide raised $15,000 for Cystic Fibrosis South Australia and the Cure for Cystic Fibrosis Foundation.</p> <p style="text-align: center;"><img width="500" height="333" src="https://oversixtydev.blob.core.windows.net/media/35560/susan-in-text_500x333.jpg" alt="Susan In Text"/></p> <p>Susan’s granddaughter was delighted once she told her the idea for the walk.</p> <p> “‘Oh, wow Nana’, that’s what she said. She’s been very enthusiastic saying ‘I’ll walk with you’ and she did walk with us. She walked down the hill and then got in the car to go up the hill. She will walk again this year as best as she can,” said Susan.</p> <p><strong>The impact of cystic fibrosis</strong></p> <p>Although currently Tehya-Rose’s condition is not as bad as some cystic fibrosis sufferers, her condition is worsening.</p> <p>Susan rattled off the names of medications that her granddaughter is required to take daily. Some cystic fibrosis sufferers are required to take up to 50-60 tablets a day.</p> <p>“It’s always hard to watch a child struggle with something. It’s hard to watch family struggling,” said Susan.</p> <p>Cystic fibrosis impacts her granddaughter in all facets of her life, even the “little things like day to day things”.</p> <p>“She runs out of breath more easily than other kids so she does sport but it is a little bit more of a struggle for her, but she will keep doing it,” explained Susan, continuing, “And the fact that she has to go to hospital every so often to have very powerful antibiotics drugs pumped into her for two weeks. When she goes it’s a minimum of two weeks, never just a couple of days.”</p> <p>Susan’s aim is to make cystic fibrosis as well-known as cardiac problems and cancer.</p> <p>“Something people think ‘I can’t catch it so it’s not important’ and I don’t want them to feel that way. These kids deserve to have a cure found for them as well,” said Susan.</p> <p><strong>The support of the walk</strong></p> <p>Although Susan underwent surgery just before Christmas, she is not letting anything stop her from completing her walk. Susan’s family walks with her for as much as they can but Susan also has strangers join her.</p> <p>These strangers – families and individuals – are usually people who also have a loved one suffering from cystic fibrosis. Sometimes they are even sufferers themselves.</p> <p>“It happened to me just the other day someone just came up to me and gave me a big hug and said, ‘Thank you so much for doing this for my child’,” Susan recalled.</p> <p>“That just brings tears to my eyes and makes it worthwhile. People feel like I’m doing something to help them, that’s what it’s all about helping other people isn’t it.”</p> <p>Susan started the walk on March 25 and will arrive at Peace Park in Adelaide on April 30.</p> <p>“My goal is to have as many people become aware of cystic fibrosis as I can touch and make them aware. I’d love to beat last year’s amount, that would be fantastic but I’ve still set my goal at $15, 000 and if I get there, I’ll just keep on going.”</p> <p>If you would like to support Susan’s walk <a href="https://give.everydayhero.com/au/susanstrides4cf" target="_blank"><strong><span style="text-decoration: underline;">click here</span></strong></a> and to read her updates of the walk, follow her <a href="https://www.facebook.com/susanstirdes4cf/" target="_blank"><strong><span style="text-decoration: underline;">Facebook page</span></strong></a>.</p>

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