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Mother and son reunited after rigid aged care rules divided them

<p>An elderly woman and her disabled son are celebrating after they successfully beat a bureaucratic blockage that threatened to <a href="https://oversixty.com.au/lifestyle/family-pets/red-tape-threatens-to-remove-a-man-with-down-s-syndrome-from-his-elderly-mother" target="_blank" rel="noopener">split</a> them up for good. </p> <p>Anne Deans, 81, and her 56-year-old son, Mark, who suffers from Down's syndrome, were hoping to live together in Anne's aged care facility, but the pair were met with countless hurdles when trying to get Mark a room of his own. </p> <p>Now, Mark's sister Sharon shared the happy news that the mother and son are to be reunited.</p> <p>"We're very happy today. We've got a great result," Sharon told <a href="https://9now.nine.com.au/a-current-affair/melbourne-mum-and-son-living-with-downs-syndrome-reunited-in-aged-care-facility/ff023844-be2d-4ab8-be95-75bf91f17b4a" target="_blank" rel="noopener"><em>A Current Affair</em></a>.</p> <p>"I'm so grateful that people understood and they listened. That's all I ever wanted through this whole thing, was someone to listen."</p> <p>The problems began when authorities originally refused Mark's request to move into Anne's aged care facility, with federal government policy saying that aged care is "not appropriate for people under 65".</p> <p>But Mark's relatives argued that given the life expectancy of people living with Down's syndrome is 60 years, an exception should be made.</p> <p>A new assessment was done and Mark has been granted a place at the same nursing home as his mother, as Mark's other sister Michelle said, "We got what we wanted. Everything worked out perfectly, the way it's supposed to."</p> <p>After Anne received the exciting news, she said, "I'm feeling great. He's staying with Mum!"</p> <p>Sharon and Michelle hope that their experience will assist other families with unique circumstances.</p> <p>"My advice is to keep pushing," Sharon said. "Only you know your family and you have to be their voice.</p> <p>"There's a lot of difference out there and a lot of people who are individuals [and] they need to be looked at individually."</p> <p><em>Image credits: A Current Affair </em></p>

Legal

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Red tape threatens to remove a man with Down's syndrome from his elderly mother

<p>An elderly mother and her disabled son are at risk of being separated over the woman's aged care home's red tape. </p> <p>Anne Deans, 81, moved into an aged care facility in July and hoped that she would be able to bring her son, Mark, who suffers from Down's syndrome with her. </p> <p>Mark, 56, has always lived with his mother, and despite his disability, has lived a full life and has dabbled in acting, appearing on Aussie TV hit <em>Blue Heelers</em>.</p> <p>But now, the mother and son have been left in limbo by a bureaucratic battle. </p> <p>Despite the family's history and Mark's disability, the government refuses to fund a place for Mark at Anne's aged care home, stating that aged care is "not an appropriate service for people aged under 65".</p> <p>"People with Down's syndrome have a life expectancy of 60 years. That's if we're lucky. So Mark is experiencing all of the age issues that my Mum is," Mark's sister Sharon said.</p> <p>Sharon and her sister Michelle have been lobbying on Mark's behalf, with Michelle saying, "I don't know why it's so hard. There's so much red tape."</p> <p>"There's so many hills to jump, just to have a mum and a son together. It doesn't make any sense."</p> <p>Anne is digging in and appealing to the Minister for Aged Care Anika Wells for help. </p> <p>"I brought him up all these years, and all of a sudden someone's going to walk in and take him out," Anne told <a href="https://9now.nine.com.au/a-current-affair/victoria-red-tape-threatens-to-tear-man-with-disability-from-his-mum/df4ef75b-6df1-4507-8a73-dfae0b258e08" target="_blank" rel="noopener"><em>A Current Affair</em></a>.</p> <p>"It is damn ridiculous. They should open up their eyes and see what it's doing. He's not going anywhere. I don't know how I'm going to stop it, but I will."</p> <p>In a statement, Ms Wells said, "While Aged Care is generally not suitable for people under the age of 65, we recognise there are exceptional circumstances where people may need to enter aged care before this age, including when there is no suitable accommodation for them."</p> <p>"The New Aged care Act includes exceptional circumstances for people to enter Aged Care before they turn 65, including when they would otherwise be at risk of homelessness."</p> <p>"There are processes in place to support people to explore their options and ensure they have safe and appropriate accommodation."</p> <p>"We encourage Mark to continue to work with Ability First Australia and the Aged Care Assessment Teams to explore all the options."</p> <p><em>Image credits: A Current Affair </em></p>

Family & Pets

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Mysterious leg pain that’s quietly killing older Australians

<p>Peripheral Artery Disease (PAD) has long been overshadowed by its more widely recognised counterparts, such as heart attacks and strokes. Often referred to as the “poor cousin” or “Cinderella” of cardiovascular diseases, PAD affects one in five older Australians, yet it remains largely under-diagnosed and misunderstood. However, a wave of optimism is sweeping through the medical community with the launch of <a href="https://www.hri.org.au/our-research/centreforpad" target="_blank" rel="noopener">The Centre for Peripheral Artery Disease</a>, an Australian-first facility dedicated to pioneering research and improving patient outcomes.</p> <p>Spearheaded by the Heart Research Institute, the Centre for Peripheral Artery Disease, marks a significant step forward in addressing the challenges posed by PAD. The centre aims to fill critical gaps in our understanding of the disease, which is responsible for a limb amputation in Australia every two hours. This initiative promises to enhance diagnosis, transform patient care, and raise awareness about PAD.</p> <p>Associate Professor Mary Kavurma, the Centre Lead, is at the forefront of this ground-breaking effort. “We’re supercharging research into PAD because there are still many unknowns about the disease’s biology that could unlock new methods for early detection and better management,” she explains. This research is particularly urgent given the prevalence of PAD among women and First Nations Australians, groups that remain disproportionately affected by this condition.</p> <p>The centre’s mission is to develop a simple blood test for early diagnosis and explore novel therapies that could reduce the need for limb amputations and significantly improve patients’ quality of life. Unlike current treatments that primarily focus on symptom management, this new approach seeks to prevent the disease from progressing.</p> <p>One of the most inspiring aspects of the centre is its commitment to involving patients and their families in the research process. At the inaugural consumer meeting, nearly 20 patients and their carers shared their personal experiences with PAD. </p> <p>Take the story of Simon Josephson, a renowned advertising guru – who famously designed the Solo logo. PAD almost cost him his life after taking more than five years to diagnose.</p> <p>He woke up one morning with a sore leg, thinking he’d overdone it exercising but the 73-year-old – who was otherwise healthy and active – unknowingly had Peripheral Artery Disease, caused by a build-up of plaque in his arteries causing them to narrow and stiffen.</p> <p>It wasn’t until a trip to the hospital emergency department years later that doctors would discover his aorta had expanded to more than twice the usual size and was at risk of rupturing. He immediately underwent open heart surgery and has faced a lengthy recovery.</p> <p>The launch of <a href="https://www.hri.org.au/our-research/centreforpad" target="_blank" rel="noopener">The Centre for Peripheral Artery Disease</a> heralds a new era of hope and progress in the fight against PAD. Through world-leading research, community engagement, and a commitment to patient-centred care, the CPAD is poised to make a profound impact on the lives of many Australians. As Assoc Prof Kavurma aptly put it, “By understanding more about this debilitating condition, we are paving the way for better health outcomes and a brighter future for all those affected by PAD.”</p> <p><em>Images: CPAD</em></p>

Caring

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Life after the kids leave: Navigating changes and embracing empty nest syndrome

<p>As your children grow up and go to college, you dread the day they will leave your nest. When they finally leave, it is natural to feel empty and miss the familiar echoes of laughter around the dinner table. While feeling a sense of loss is natural for every parent, it shouldn’t linger. When the feeling lingers, it becomes the empty nest syndrome.</p> <h2>What Is Empty Nest Syndrome?</h2> <p>Empty nest syndrome is an emotional phase and a sense of loss that parents experience when children leave home. Your children becoming adults and leaving your nest symbolises the end of active parenting responsibilities. Since you are uncertain about what to do with the free time on your hands, you may experience a loss of identity and purpose. You have fewer chores and miss your children.</p> <p>When you have empty nest syndrome, you experience a mix of emotions. You may feel lonely and sad in an empty house. The feeling lasts a few days or weeks, but for others, it is intense and may stir up anxiety. If you have empty nest syndrome, you may feel a sense of redundancy and persistent sadness. With no more school runs and daily involvement in your kids’ lives, it’s easy to feel redundant in their lives, leaving you with a lingering sadness and restlessness.</p> <h2>How to Deal with Empty Nest Syndrome</h2> <p>If you are experiencing empty nest syndrome, you can take the following steps to live a fulfilling life:</p> <p><strong>Set New Goals</strong></p> <p>The sudden quietness that comes with children leaving the house can be jarring. However, in the silence awaits a new chapter of your life that starts with you setting new goals. Think about what you want to learn or try out, and write down the steps you need to get there. Whether it is travelling the world or picking up a new hobby, you can achieve self-fulfilment.</p> <p><strong>Identify New Ways to Strengthen Family Bonds</strong></p> <p>You need to redefine your relationships with your children and partner. Your parenting role takes centre stage in your life. As the nest empties, you have a chance to nurture the bond with your partner. Discover each other's aspirations and dreams. You can travel the world together or find new hobbies as a couple. You also need to redefine your bond with your children. Understand that the relationship with your adult children is evolving. Stay connected to your kids, but ensure they have their independence.</p> <p><strong>Adapt Your Cooking Style for Two</strong></p> <p>When you have children at home, you cook for a large family, and you are always excited to prepare the next meal. As your children move out, you have to transition to cooking in a smaller household. Downsizing meals can be challenging when you are used to preparing a large pot of food. Portioning meals to avoid cooking excess food will be challenging at first. However, you can find meal kits from meal delivery services, such as <a href="https://www.hellofresh.com.au/" target="_blank" rel="nofollow noopener">HelloFresh</a>, that offer meal kits for two. Most meal delivery services send pre-portioned ingredients to prevent food waste.</p> <h2>Discovering New Hobbies to Bring Joy and Fulfilment</h2> <p>Reduce your empty nest symptoms by finding new, exciting activities. Having new hobbies gives you a sense of fulfilment and takes up your time. Consider learning new hobbies like gardening, writing or volunteering. Join a club in the community or volunteer programs. It’s a great way to meet new people and fill up your free time with rewarding experiences.</p> <p>Empty nest syndrome is a period of transformation, and it’s important to maintain a positive attitude during this period. You can rediscover yourself and redefine your priorities. If there is a dream you had put on hold, you can pick it up.</p> <p><em>Image: Becca Tapert / Unsplash</em></p> <p><em>This is a sponsored article produced in partnership with HelloFresh.</em></p>

Family & Pets

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"Felt like a criminal": Mother and disabled son "kicked out" of Pink concert

<p>A distraught mother has taken to social media to recall the moment her and her seven-year-old son, who has Down syndrome, were asked to leave a concert venue. </p> <p>Vanessa Vasey, 48, spent over $1,000 to take her son Jesse to see Pink in London during her UK stadium tour, but when the pair arrived at the venue, things took a turn. </p> <p>Jesse struggled to stay still in his seat and was soon surrounded by "six security guards" who ordered the disabled boy to sit down, otherwise they would have to leave.</p> <p>She said she tried to explain her son’s condition to the guards but they ended up being “escorted from the premises” just as Pink took to the stage.</p> <p>On Facebook, Vasey wrote in detail about what happened, saying her son had been “robbed” of a special experience.</p> <p>“Music is his life and Pink is one of his absolute favourites,” she wrote.</p> <p>“We successfully saw her perform at BST Hyde Park last year and were thrilled to learn of her return again this year.”</p> <p>Vasey said she purchased more expensive “hospitality tickets” allowing people to move between bars and food outlets during the night “so that Jesse wouldn’t be pressured into remaining in one seat all night, as he gets overwhelmed in busy environments and finds it hard to sit still.”</p> <p>“We spent some time in the bar leading up to the main act, and Jesse was having a wonderful time, until about 45 minutes before Pink was due to come on, they suddenly shut all the blinds, obstructing us from seeing anything,” she wrote.</p> <p>“I tried to consult with the hospitality managers over this, and explained Jesse’s needs, but they wouldn’t budge on it. So not wanting Jesse to stare at a blind all night, we attempted to go into the seating zone."</p> <p>“We couldn’t get him to sit in his seat, but he was happy dancing and singing at the front railings, and even interacting with some of the other guests."</p> <p>“Doing no harm to anyone, or obstructing anyone’s view. This seemed OK for about half an hour or so. Then ... just as Pink dropped from the sky in her opening number, we had six security guards come into the zone and ask us to leave or sit in our seats.”</p> <p>Vasey said the security guards were “abrupt, intimidating and unpleasant”, as they "tried to force us to take Jesse to a sensory room which was soundproof, and watch Pink on a screen.” </p> <div> </div> <p>“Something we could do at home, robbing us of the whole experience, as if my son was some sort of inconvenience, and better off shut in a room out of sight.”</p> <p>When Vasey complained to venue staff, she claims that more security guards appeared and they had no choice but to leave. </p> <p>“We were escorted out of the building like criminals and saw no more of the Pink show. Jesse was utterly devastated, and they showed absolutely zero care or understanding."</p> <p>“Shame on you Tottenham Stadium,” she concluded. “My poor boy deserved so much better than this!”</p> <p>After UK media picked up Vasey's story, Tottenham Stadium released a statement explaining their actions. </p> <p>“Following further investigation, we can confirm that Ms Vasey was offered assistance by our Safeguarding and Welfare teams throughout the night to provide Jesse with a comfortable viewing experience, including access to our dedicated Sensory Room,” the statement read.</p> <p>“The offers of assistance were declined by Ms Vasey and the party chose to leave the event.”</p> <p>Vasey was soon set upon by online trolls who condemned her choice to take Jesse to the concert in the first place, to which she issues a lengthy statement about inclusivity and not singling people out for their disabilities. </p> <p>“Why do we take them [to events]? Because, as parents, we have the same dreams and aspirations for our children as any other parent,” she wrote.</p> <p>“We have the same desires to see our children’s faces light up, as any other parent would. Our children are exposed to the same world as other children, and they enjoy the same things."</p> <p>“They have the same likes and desires. The only thing that’s different is their needs, their abilities and their way of accessing their dreams."</p> <p>“Why should these things deny them of fulfilling these dreams and passions? This is meant to be a world of inclusion. So let’s start including!"</p> <p>“That means adapting, understanding, supporting and most importantly; changing the way we deliver these privileges so that they are privileges for all of us, and not just some of us.”</p> <p><em>Image credits: Facebook/Richard Isaac/Shutterstock Editorial </em></p> <div class="hide-print ad-no-notice css-qyun7f-StyledAdUnitWrapper ezkyf1c0" style="box-sizing: border-box; caret-color: #292a33; color: #292a33; font-family: HeyWow, Montserrat, 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 15px;"> </div>

Caring

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Teen with Down Syndrome sets new world record

<p>A 19-year-old teen with Down Syndrome has conquered the London Marathon and became a Guinness World Record after just five months of training. </p> <p>Lloyd Martin from Cardiff completed the 42.1 km course across the capital with his mother cheering him on. </p> <p>Guinness World Record has awarded him the certificate for becoming the youngest person in his learning disability category to finish a marathon. </p> <p>"I'm so excited to run London. I love being fit and healthy and I want to make my family and friends proud," the teenager said. </p> <p>Mum Ceri Hooper also told the<em> BBC</em> how proud she was of her son's accomplishment. </p> <p>"In Lloyd's words, it's achieving his dream," she said. </p> <p>"Really anything is possible if you put your mind to it. With a bit of work, you can achieve it."</p> <p>Recalling the experience, the proud mum said: "He ran continuously for 14 miles which is the longest he's ever run before." </p> <p>Although Lloyd walked for a bit after his 14-mile-long streak, the crowd cheered him on every step of the way, and despite the challenge the mother-and-son duo had "a ball". </p> <p>The pair were at a loss for words when he finally crossed the finish line and they both "burst into tears." </p> <p>Lloyd is also now the third Welsh Special Olympics athlete to compete in the London Marathon. </p> <p>Prior to completing the world-famous marathon, Lloyed had completed an astonishing 30 Parkruns. </p> <p>Until last Christmas the teenager had never run further than three miles, but his mother was determined to get him marathon-ready. </p> <p>Ceri, who has taken on the London Marathon four times, created a specialised training regime for her son which included weekly runs. </p> <p>Lloyd managed to secure a spot in the marathon thanks to the help of the Special Olympics GB, where he is also a footballer and a gymnast. </p> <p><em>Images: Facebook/ Twitter</em></p>

Caring

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Young and the Restless star passes away after cancer battle

<p>Veteran soap opera actress Meg Bennett has died at the of 75 after a lengthy battle with cancer. </p> <p>According to <a href="https://www.hollywoodreporter.com/tv/tv-news/meg-bennett-dead-young-and-restless-1235878548/" target="_blank" rel="noopener"><em>The Hollywood Reporter</em></a>, Bennett's family announced that she passed away on April 11th. </p> <p>Bennett had a prolific career in the world of soap operas as both a writer and actress, after working on high profile shows such as <em>The Young and the Restless</em>, <em>General Hospital</em>, <em>Santa Barbara</em> and many more. </p> <p>She became most known for her role on <em>The Young and the Restless</em>, appearing on 52 episodes from 1980–2020 playing the role of Julia Martin/Julia Newman, the spouse of Eric Braeden’s character Victor Newman.</p> <p>Bennett also had a stellar career on Broadway, appearing in the initial run of the musical <em>Grease</em> in 1972 playing the role of Marty Maraschino for more than two years.</p> <p>She also racked up a significant credit as a writer on a number of soaps, stepping behind the camera on <em>The Young and the Restless</em> after her character was phased out. </p> <p>In the interview in 1985, Bennett opened up about the differences in her approach to acting and writing.</p> <p>She said, "I'll admit, acting makes me a little crazy sometimes: You wait to audition. You wait for the part. When you're writing, you're in control. I can initiate things on my own when I'm writing."</p> <p>Bennett is survived by her spouse of 19 years Robert Guza Jr., as well as two stepdaughters, four grandchildren, a brother and a sister. </p> <p><em>Image credits: Getty Images</em></p>

Caring

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Celine Dion shares rare health update

<p>Celine Dion has shared a rare health update, and revealed that she is determined to get back onstage despite her battle with stiff person syndrome. </p> <p>The singer took to Instagram to share a photo of herself with son René-Charles Angélil, 23, and 13-year-old twins Eddy and Nelson. </p> <p>“Trying to overcome this auto-immune disorder has been one of the hardest experiences of my life, but I remain determined to one day get back onto the stage and to live as normal of a life as possible,” she shared on Friday. </p> <p>“I am deeply grateful for the love and support from my kids, family, team and all of you!”</p> <p>She shared the post in honour of stiff person syndrome awareness day, which falls on the 15th of March. </p> <p>“I want to send my encouragement and support to all those around the world that have been affected by SPS,” she continued in her post. </p> <p>“I want you to know you can do it! We can do it!” she concluded, signing off, “Love Celine xx.”</p> <blockquote class="instagram-media" 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: 540px; min-width: 326px; padding: 0; width: calc(100% - 2px);" data-instgrm-captioned="" data-instgrm-permalink="https://www.instagram.com/p/C4j2U_6OI-9/?utm_source=ig_embed&amp;utm_campaign=loading" data-instgrm-version="14"> <div style="padding: 16px;"> <div style="display: flex; flex-direction: row; align-items: center;"> <div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;"> </div> <div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center;"> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;"> </div> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;"> </div> </div> </div> <div style="padding: 19% 0;"> </div> <div style="display: block; height: 50px; margin: 0 auto 12px; width: 50px;"> </div> <div style="padding-top: 8px;"> <div style="color: #3897f0; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: 550; line-height: 18px;">View this post on Instagram</div> </div> <div style="padding: 12.5% 0;"> </div> <div style="display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;"> <div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);"> </div> <div style="background-color: #f4f4f4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;"> </div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);"> </div> </div> <div style="margin-left: 8px;"> <div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;"> </div> <div style="width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg);"> </div> </div> <div style="margin-left: auto;"> <div style="width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);"> </div> <div style="background-color: #f4f4f4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);"> </div> <div style="width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);"> </div> </div> </div> <div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center; margin-bottom: 24px;"> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 224px;"> </div> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 144px;"> </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/C4j2U_6OI-9/?utm_source=ig_embed&amp;utm_campaign=loading" target="_blank" rel="noopener">A post shared by Céline Dion (@celinedion)</a></p> </div> </blockquote> <p>Stiff Person Syndrome is an an extremely rare neurological disorder that affects the nervous system, mainly the brain and spinal cord. </p> <p>According to the US National Institutes of Health, this disorder can cause stiff muscles in the torso, arms and legs, significantly impeding mobility. </p> <p>The <em>My Heart Will Go On</em> singer first went <a href="https://www.oversixty.com.au/health/caring/celine-dion-reveals-shock-diagnosis" target="_blank" rel="noopener">public</a> with her diagnosis on the 8th of December in 2022, after she was forced to postpone some of her tour dates. </p> <p><em>Image: Instagram</em></p> <p> </p>

Caring

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Celine Dion shares powerful message of hope

<p>Celine Dion has shared a powerful statement about her health battle since being diagnosed with stiff person syndrome. </p> <p>The French-Canadian musician has chronicled her health journey in a new documentary titled <em>I Am: Celine Dion</em>, and took to Instagram to promote the new film. </p> <p>While sharing with her legion of fans how her health has progressed, she said she remains hopeful that she will one day return to the stage.</p> <p>In a lengthy post, she wrote, “This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me."</p> <p>"As the road to resuming my performing career continues, I have realised how much I have missed it, of being able to see my fans."</p> <p>"During this absence, I decided I wanted to document this part of my life, to try to raise awareness of this little-known condition, to help others who share this diagnosis.” </p> <p>In December 2022, Celine announced that she would be taking some time away from performing  to focus on her health after revealing her stiff person syndrome diagnosis.</p> <p>At the time, she said the condition did not allow her “to sing the way I’m used to”.</p> <p>According to the <a href="https://www.ninds.nih.gov/health-information/clinical-trials/cause-development-and-progression-stiff-person-syndrome#:~:text=Stiff%2Dperson%20syndrome%20(SPS),recurrent%20falls%20and%20impaired%20ambulation." target="_blank" rel="noopener">National Institute of Neurological Disorders and Stroke</a>, stiff person syndrome is “a rare, progressive syndrome that affects the nervous system, specifically the brain and spinal cord.”</p> <p>According to an official synopsis, <em>I Am: Celine Dion</em> will give viewers an intimate look inside her life “as she reveals her battle with stiff person syndrome (SPS) and the lengths she has gone to continue performing for her beloved and loyal fans”.</p> <p>Capturing over a year’s worth of Dion’s life, including “never-before-seen” private moments, the film will showcase the legendary singer navigating “her journey toward living an open and authentic life amidst illness”.</p> <p><em>Image credits: Getty Images </em></p>

Caring

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Young and the Restless star’s baby girl hospitalised

<p>In a deeply emotional and concerning post, popular American soap actor Jordi Vilasuso has reached out to the public, seeking prayers for his baby daughter Lucy, who is currently battling respiratory syncytial virus (RSV) and a partially collapsed lung.</p> <p>The <em>Young and the Restless</em> actor, along with his wife Kaitlin, has been candid about their family's struggles, and their latest plea for support has left fans and followers deeply moved.</p> <p>The distressing update was shared by Jordi on his social media platforms, as he revealed the harrowing journey Lucy has been through. The post detailed the rapid deterioration of Lucy's health, from the initial diagnosis of RSV to her subsequent hospitalisation due to difficulty breathing. The situation took an unexpected turn for the worse, with Lucy being moved to the Neonatal Intensive Care Unit (NICU) due to a partially collapsed right lung.</p> <blockquote class="instagram-media" 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: 540px; min-width: 326px; padding: 0; width: calc(100% - 2px);" data-instgrm-captioned="" data-instgrm-permalink="https://www.instagram.com/p/C2iurRXvfQ4/?utm_source=ig_embed&utm_campaign=loading" data-instgrm-version="14"> <div style="padding: 16px;"> <div style="display: flex; flex-direction: row; align-items: center;"> <div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;"> </div> <div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center;"> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;"> </div> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;"> </div> </div> </div> <div style="padding: 19% 0;"> </div> <div style="display: block; height: 50px; margin: 0 auto 12px; width: 50px;"> </div> <div style="padding-top: 8px;"> <div style="color: #3897f0; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: 550; line-height: 18px;">View this post on Instagram</div> </div> <div style="padding: 12.5% 0;"> </div> <div style="display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;"> <div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);"> </div> <div style="background-color: #f4f4f4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;"> </div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);"> </div> </div> <div style="margin-left: 8px;"> <div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;"> </div> <div style="width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg);"> </div> </div> <div style="margin-left: auto;"> <div style="width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);"> </div> <div style="background-color: #f4f4f4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);"> </div> <div style="width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);"> </div> </div> </div> <div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center; margin-bottom: 24px;"> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 224px;"> </div> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 144px;"> </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/C2iurRXvfQ4/?utm_source=ig_embed&utm_campaign=loading" target="_blank" rel="noopener">A post shared by KAITLIN VILASUSO (@kaitlinvilasuso)</a></p> </div> </blockquote> <p>Jordi's heartfelt words reflected the gravity of the situation: "Last night, things unexpectedly took a turn for the worse and she was moved to NICU w/ what the doctors described as a partially collapsed right lung. I am still struggling to believe this as I type."</p> <p>The accompanying photos paint a poignant picture of Lucy's tiny form surrounded by medical equipment in the NICU, evoking empathy and concern from those who have followed the Vilasuso family's journey.</p> <p>Kaitlin, also sharing updates on her Instagram Story, posted a video of her sister, actor Bailee Madison, spending time with Lucy while the couple's older children, Riley and Everly, received attention. In the video, Kaitlin expressed gratitude for the support, captioning it: "My angel of a sister loving on Lucy so we could love on our big girls for a few."</p> <blockquote class="instagram-media" 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: 540px; min-width: 326px; padding: 0; width: calc(100% - 2px);" data-instgrm-captioned="" data-instgrm-permalink="https://www.instagram.com/p/C2sn8nLS2-B/?utm_source=ig_embed&utm_campaign=loading" data-instgrm-version="14"> <div style="padding: 16px;"> <div style="display: flex; flex-direction: row; align-items: center;"> <div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;"> </div> <div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center;"> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;"> </div> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;"> </div> </div> </div> <div style="padding: 19% 0;"> </div> <div style="display: block; height: 50px; margin: 0 auto 12px; width: 50px;"> </div> <div style="padding-top: 8px;"> <div style="color: #3897f0; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: 550; line-height: 18px;">View this post on Instagram</div> </div> <div style="padding: 12.5% 0;"> </div> <div style="display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;"> <div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);"> </div> <div style="background-color: #f4f4f4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;"> </div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);"> </div> </div> <div style="margin-left: 8px;"> <div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;"> </div> <div style="width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg);"> </div> </div> <div style="margin-left: auto;"> <div style="width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);"> </div> <div style="background-color: #f4f4f4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);"> </div> <div style="width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);"> </div> </div> </div> <div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center; margin-bottom: 24px;"> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 224px;"> </div> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 144px;"> </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/C2sn8nLS2-B/?utm_source=ig_embed&utm_campaign=loading" target="_blank" rel="noopener">A post shared by KAITLIN VILASUSO (@kaitlinvilasuso)</a></p> </div> </blockquote> <p>As the Vilasuso family faces this challenging time, the outpouring of love, prayers and healing energy from fans, friends and fellow actors has been significant. Bailee Madison, taking to her own Instagram Story, thanked everyone for their support, saying, "love and prayers and healing energy coming" for her niece.</p> <p>This heartbreaking situation comes after the couple's announcement of Kaitlin's pregnancy in September 2023. The journey to this point has been marked by adversity, as the couple had previously experienced the loss of two children during pregnancy. Kaitlin underwent a surgical procedure called a cerclage, a delicate intervention aimed at preventing further losses by temporarily sewing the cervix closed with stitches.</p> <p>The Vilasuso family's openness about their highs and lows has endeared them to many, and as Lucy fights for her health in the NICU, the couple is once again relying on the support of their community to pray for a miraculous healing for their precious daughter.</p> <p><em>Images: Instagram</em></p>

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Celine Dion's first public appearance in years since cruel diagnosis

<p>Celine Dion, the iconic Canadian singer, has recently made a triumphant return to the public eye after a few years of battling a rare neurological disorder called Stiff Person Syndrome. This inspiring comeback took place as she attended a hockey game in Las Vegas, watching the match between the Vegas Golden Knights and the Montreal Canadiens alongside her sons, René-Charles, and twins, Eddy and Nelson.</p> <p>After the thrilling game, Dion made her way to the locker room, and her visit was captured in images and a reel shared by the Montreal Canadiens, the team she came to support.</p> <p>In the clip, the embattled singer appeared to be in high spirits as she interacted with players and coaches, expressing her delight at meeting them all.</p> <p>The Montreal Canadiens shared their excitement on social media in what was a heartwarming moment for both Dion and her fans – especially getting to witness her enthusiasm and resilience.</p> <blockquote class="instagram-media" 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: 540px; min-width: 326px; padding: 0; width: calc(100% - 2px);" data-instgrm-captioned="" data-instgrm-permalink="https://www.instagram.com/reel/CzFTVOwLPUP/?utm_source=ig_embed&utm_campaign=loading" data-instgrm-version="14"> <div style="padding: 16px;"> <div style="display: flex; flex-direction: row; align-items: center;"> <div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 40px; margin-right: 14px; width: 40px;"> </div> <div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center;"> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 100px;"> </div> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 60px;"> </div> </div> </div> <div style="padding: 19% 0;"> </div> <div style="display: block; height: 50px; margin: 0 auto 12px; width: 50px;"> </div> <div style="padding-top: 8px;"> <div style="color: #3897f0; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: 550; line-height: 18px;">View this post on Instagram</div> </div> <div style="padding: 12.5% 0;"> </div> <div style="display: flex; flex-direction: row; margin-bottom: 14px; align-items: center;"> <div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(0px) translateY(7px);"> </div> <div style="background-color: #f4f4f4; height: 12.5px; transform: rotate(-45deg) translateX(3px) translateY(1px); width: 12.5px; flex-grow: 0; margin-right: 14px; margin-left: 2px;"> </div> <div style="background-color: #f4f4f4; border-radius: 50%; height: 12.5px; width: 12.5px; transform: translateX(9px) translateY(-18px);"> </div> </div> <div style="margin-left: 8px;"> <div style="background-color: #f4f4f4; border-radius: 50%; flex-grow: 0; height: 20px; width: 20px;"> </div> <div style="width: 0; height: 0; border-top: 2px solid transparent; border-left: 6px solid #f4f4f4; border-bottom: 2px solid transparent; transform: translateX(16px) translateY(-4px) rotate(30deg);"> </div> </div> <div style="margin-left: auto;"> <div style="width: 0px; border-top: 8px solid #F4F4F4; border-right: 8px solid transparent; transform: translateY(16px);"> </div> <div style="background-color: #f4f4f4; flex-grow: 0; height: 12px; width: 16px; transform: translateY(-4px);"> </div> <div style="width: 0; height: 0; border-top: 8px solid #F4F4F4; border-left: 8px solid transparent; transform: translateY(-4px) translateX(8px);"> </div> </div> </div> <div style="display: flex; flex-direction: column; flex-grow: 1; justify-content: center; margin-bottom: 24px;"> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; margin-bottom: 6px; width: 224px;"> </div> <div style="background-color: #f4f4f4; border-radius: 4px; flex-grow: 0; height: 14px; width: 144px;"> </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/reel/CzFTVOwLPUP/?utm_source=ig_embed&utm_campaign=loading" target="_blank" rel="noopener">A post shared by Canadiens de Montréal (@canadiensmtl)</a></p> </div> </blockquote> <p>Stiff Person Syndrome is an extremely rare neurological disorder that primarily affects the nervous system, specifically the brain and spinal cord. According to the National Institute of Neurological Disorders and Stroke, this condition manifests in symptoms such as extreme muscle stiffness, rigidity, and painful spasms in the trunk and limbs, significantly impeding mobility.</p> <p>Dion's battle with Stiff Person Syndrome forced her to postpone some tour dates, as the disorder was affecting her ability to sing the way she was accustomed to. In a video clip shared on social media, she addressed her fans and revealed her determination to overcome the challenges posed by this condition.</p> <p>"I'm working hard with my sports medicine therapist every day to build back my strength and my ability to perform again," she shared. "But I have to admit it's been a struggle." Dion's candour about her struggles and her unwavering commitment to her recovery have earned her even more admiration from her fans.</p> <p>Celine Dion's journey with Stiff Person Syndrome has been a testament to her strength and resilience. She has shown that even in the face of a rare and debilitating condition, she refuses to be defeated. Her determination to regain her ability to perform is a source of inspiration to all who face adversity in their lives.</p> <p>It's worth noting that Celine Dion has faced significant personal challenges in the past, most notably the loss of her husband, René Angélil, in 2016 to throat cancer. Despite these difficulties, she has continued to be a shining star in the world of music. Her return to the public eye, following her battle with Stiff Person Syndrome, is a testament to her enduring spirit and the deep connection she has with her fans.</p> <p>As Celine Dion makes her way back into the spotlight, her fans around the world eagerly await her return to the stage, where her powerful voice and indomitable spirit will undoubtedly continue to inspire and uplift us all. Her story serves as a reminder that with determination and a strong support system, even the most formidable challenges can be overcome.</p> <p><em>Images: Instagram</em></p>

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Young and the Restless actor's cause of death revealed

<p>Award-winning soap actor Billy Miller's family have spoken up about his official cause of death. </p> <p>News of <em>The Young and the Restles</em>s <a href="https://www.oversixty.com.au/news/news/young-and-the-restless-actor-dies-at-just-43" target="_blank" rel="noopener">actor's death</a> shocked the world, as he tragically passed away just two days shy of his 44th birthday.</p> <p>Miller’s devastated mother, Patricia, released a statement to the<em> Soap Opera Digest o</em>n Wednesday to confirm that the actor's cause of death was suicide, and debunk any rumours or speculation behind his death. </p> <p>“I want to personally thank the many fans & personal friends for the overwhelming amount of love, prayers & condolences sent to me and my family on the devastating death of my beautiful son BJ — Billy Miller,” she began the statement. </p> <p>“He fought a long hard valiant battle with bipolar depression for years. He did everything he could to control the disease.</p> <p>“He loved his family, his friends and his fans but in the end the disease won the fight and he surrendered his life.</p> <p>"The other causes of death being told are not true. I wish they were but they just aren’t.</p> <p>“We all loved him so much and are desperately trying to deal with our loss. I will have nothing further to say. Thanks for the love and support," she concluded. </p> <blockquote class="twitter-tweet"> <p dir="ltr" lang="en">Patricia Miller has asked me to share the following on her behalf. <a href="https://t.co/90ze1MZHGy">pic.twitter.com/90ze1MZHGy</a></p> <p>— Marnie Sparer (@TalktoMarn) <a href="https://twitter.com/TalktoMarn/status/1703919692455559264?ref_src=twsrc%5Etfw">September 18, 2023</a></p></blockquote> <p>Miller is a three-time daytime Emmy winner for his work as Billy Abbott in <em>The Young and the Restless</em>. The actor started his career in 2007 on the ABC series <em>All My Children</em>, which he starred in for 130 episodes. </p> <p>He also starred in the hit legal drama <em>Suits </em>as Harvey Specter's brother Marcus. </p> <p>Gabriel Macht, the actor who played Harvey, paid tribute to Miller in a tweet. </p> <p>"RIP my tv bro #BillyMiller I am touched by ur thoughtfulness, ur authentic honest approach 2 ur art, ur kind nature & big smile that Litt us all. May ur memory always be a blessing to ur Mother, ur Sister & her children. & 2 so many you’ve touched. Peace&❤️"</p> <p>Miller is survived by his mother, Patricia, sister Megan, brother-in-law Ronnie, nephew Grayson and niece Charley.</p> <p><em>Image: Getty</em></p>

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Young and the Restless actor dies at just 43

<p>Award-winning soap actor Billy Miller has passed away, just two days before his 44th birthday. </p> <p>Miller's manager confirmed the devastating news in a statement to <a href="https://variety.com/2023/tv/news/billy-miller-dead-the-young-and-the-restless-1235725784/" target="_blank" rel="noopener"><em>Variety</em></a>, saying the actor has been "struggling with manic depression when he died".</p> <p>The actor was best known for his roles in <em>General Hospital</em> and <em>The Young and the Restless</em>, winning three Daytime Emmy's for his portray in the soaps. </p> <p>Billy's name was put on the map after a role in <em>All My Children</em>, and then signing on to become a model.</p> <p>He went on to have credits in some of the biggest shows in the US, such as <em>NCIS</em>, and <em>CSI: Crime Scene Investigation</em>, as well as Clint Eastwood blockbuster <em>American Sniper</em>.</p> <p>Former colleagues of Billy's have been devastated by the news of his passing, with many taking to social media to share fond memories and express their heartbreak. </p> <p><em>The Young and the Restless</em> alumni Eileen Davidson said she was "so sad to hear of Billy Miller's passing".</p> <p>"His infectious charm and warmth left lasting impressions on all of us who were lucky enough to have him in our lives," she continued.</p> <p>"I'm gonna miss that mischievous smile. Love you Billy."</p> <p><em>General Hospital</em> co-star TK Weaver told fans it was "hard to find words" after learning of the tragedy.</p> <p>"You always gave me such good advice. You were always there for me. You were an amazing person. Billy Miller, I'll never forget you."</p> <p>In another emotional tribute, <em>The Young and the Restless</em> star Adrienne Frantz said, "Billy Miller you lit up every room you walked into with your light, your chair and you gave the best hugs ever".</p> <p>"I'll always remember the laughs and the great times we had together. I hope you've found peace, my dear friend. I'll love you forever."</p> <p><strong><em>If you or someone you know is in need of support, contact Lifeline on 13 11 14</em></strong></p> <p><em>Image credits: Getty Images</em></p>

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Woman dies after being accused by doctors of faking symptoms

<p>A woman from New Zealand has passed away from a debilitating illness after being told by a doctor that her illness was “all in her head”.</p> <p>Stephanie Aston, 33, died after a long and public battle with Ehlers-Danlos Syndrome (EDS), a rare  genetic disorder affecting the body’s connective tissue, on September 1st. </p> <p>EDS, of which there are 13 different variants, is often referred to as an "invisible illness", as sufferers can often appear healthy despite experiencing excruciating symptoms, such as severe migraines, dislocating joints, easy bruising, abdominal pain, iron deficiency, fainting and an abnormally fast heart-rate.</p> <p>Aston said she was dismissed by a doctor in 2016, who dismissed her symptoms and told her that she was faking her disease. </p> <p>Despite being diagnosed with EDS by three different specialists, one doctor in Auckland, who Aston referred to as 'Doctor A', suggested she was not seriously unwell and indicated she was causing her illnesses, <em><a href="https://www.nzherald.co.nz/nz/stephanie-aston-death-eds-sufferers-call-for-change-after-doctors-accused-woman-of-faking-illness/VX4Q6CAWRVH25I6OCKGQ4KTW4M/">The NZ Herald</a></em> reports.</p> <p>Ehlers-Danlos Syndromes New Zealand founder Kelly McQuinlan said Stephanie's death has shocked the community, and said more needs to be done for those suffering with the debilitating condition. </p> <p>“A lot of people are feeling very lost,” she said.</p> <p>“I think most people in these rare positions or invisible illnesses, definitely experience setbacks and disbelieving because things can’t be seen but really the clinical symptoms are there that are being ignored.”</p> <p>Ms McQuinlan described Ms Aston as a “beacon” for those with the illness in a tribute to her on Facebook.</p> <p>“Most people in our community have experienced some form of sort of doctors not believing them or questioning their diagnosis which is extremely hard,” she wrote.</p> <p>“When they see someone in their community pass away, the first thing they think is ‘What if my care is not looked after? What’s going to happen to me?’.”</p> <p>“At the end of the day, if symptoms aren’t managed correctly, anyone can get sick enough that they will pass away.”</p> <p><em>Image credits: Facebook</em></p>

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New Zealand Prime Minister's heartbreaking family update

<p>New Zealand Prime Minister Chris Hipkins has announced his temporary withdrawal from political engagements to care for his 4-year-old daughter who is in hospital. </p> <p>Hipkins, who is mostly private about his personal life, opened up about his daughter's health battle for the first time in a post shared on Facebook. </p> <p>“I don’t normally talk publicly about my kids because I want them to grow up out of the public spotlight, but sometimes it’s unavoidable,” he said. </p> <p>“Both my kids have a blood condition called Von Willebrand Syndrome. It means that sometimes when they get bleeding noses or other health issues they need a bit of extra medical help to get sorted.</p> <p>“Today my four-year-old is in hospital for some needed treatment, so for the rest of the day while that is happening I’ll be working from the hospital while I’m focused on her.”</p> <p><iframe style="border: none; overflow: hidden;" src="https://www.facebook.com/plugins/post.php?href=https%3A%2F%2Fwww.facebook.com%2Fchrishipkinsmp%2Fposts%2Fpfbid021REVmAth3sr9crVCb7Na1PN42D5vskouAv5QrRf5DXWu7KUbTtq5R96gzq1G18d2l&amp;show_text=true&amp;width=500" width="500" height="381" frameborder="0" scrolling="no" allowfullscreen="allowfullscreen"></iframe></p> <p>He also thanked his colleagues for covering him over the next few days and extended his gratitude towards blood donors. </p> <p>"All going well I’ll be back at work soon, but thanks to my colleagues for covering a few engagements over the next couple of days that I’m going to have to miss.</p> <p>"Lots of New Zealanders rely on the generosity of those who give blood. Thank you to all those who help out people like my little girl," he concluded.</p> <p>Hipkins, who replaced Jacinda Ardern in January, had previously revealed that he and his wife had separated and lived apart for a year. </p> <p>At the time, he explained that they were living separately for "the best interest of our family," and he acknowledged the pressure of being a family member of a politician and prime minister. </p> <p><em>Image: Getty</em></p>

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"Tears in my eyes": King's Guard breaks protocol for photo with young royal fan

<p>A member of the King's Guard has been prised online for going out of his way to take a photo with a young man with Down's syndrome, breaking strict protocol. </p> <p>A video of the touching moment, shared by Mike the young man's carer on YouTube, caused a stir thanks to the respectful way the guard acted. </p> <p>Known worldwide for being silent and still even when trying to be distracted by tourists, it is the job of the King's Guard to stand statuesque on duty outside office royal residences. </p> <p>However, footage shows how a kind-hearted member of the Guard moved closer to Mike and the boy who were trying to get a photo to remember their trip to Horse Guards Parade by. </p> <p>Taking to Twitter to post about their day out, Mike who is a professional carer for the youngster, explained, "I've worked for his family and him for a decade now. We were out on a cycle ride on my tandem bicycle and stopped by the Horse Guards Parade."</p> <p><iframe title="YouTube video player" src="https://www.youtube.com/embed/nxvGCQY8m4c" width="560" height="315" frameborder="0" allowfullscreen="allowfullscreen"></iframe></p> <p>He admitted that "both I and the young lad" got a bit of a fright "when he stepped closer to us" because it was so unexpected, adding, "This left me with tears in my eyes for a few evenings."</p> <p>After Twitter users initially thought that Mike was the boy's father, he clarified, "I’m also not his dad, although I’d be proud to be."</p> <p>"I'm very grateful to the soldier," he continued. "I'm lucky I had good parents and went to a Jesuit school that cared about me and taught me well, same for the young lad I'm with. Tears in my eyes."</p> <p>The sweet and respectful moment delighted viewers who rushed to share their thoughts and comments on the scene.</p> <p>One person wrote, "Lovely gesture of kindness. All the guards do an exceptional job with so many tourists."</p> <p>Another social media user added, "Total respect to this Guard especially as this young lad was nervous and total respect to the lads guardian for saying thank you wish more tourists were like him."</p> <p>Someone else wrote, "This Guard never fails to melt my heart. That act of kindness brought a lump to my throat. What a sweetheart he is. Your kindness will come back to you young man."</p> <p><em>Image credits: YouTube</em></p>

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23-year-old bravely dies on her own terms

<p> A terminally ill young woman from Adelaide has ended her life under the state’s voluntary assisted dying laws.</p> <p>In a funeral notice published in the<em> Adelaide Advertiser</em>, the family of Lily Thai said she died at the Flinders Medical Centre on June 21.</p> <p>“Much loved daughter of Kate and Le. Beloved granddaughter, niece and cousin. Treasured friend to many,” the family wrote.</p> <p>The family have shared that her funeral will be held at Centennial Park Cemetery on June 29.</p> <p>She made the <a href="https://www.oversixty.com.au/health/caring/23-year-old-reveals-why-she-s-chosen-to-end-her-life" target="_blank" rel="noopener">heartbreaking decision</a> to take her own life after countless surgeries failed to improve her illness.</p> <p>Thai suffered from Ehlers Danlos Syndrome (EDS) – a genetic condition that left her completely bedridden and in constant pain.</p> <p>Her powerful story touched thousands nationwide before she passed away.</p> <p>Thai had long wished to take her own life with dignity after a battle with such a debilitating condition.</p> <p>“I decided that pain was so severe it wasn’t worth it, and I just wanted to take it into my own hands,” Thai told the Adelaide Advertiser.</p> <p>After her painful health battle, she spent her last days at the Flinders Medical Centre, where she said she mainly slept while in “excruciating pain”</p> <p>Thai had recently signed the paperwork to use South Australia’s voluntary assisted dying laws, which came into effect in January 2023, to end her life after being administered an IV medication.</p> <p><em>Image credit: The Advertiser / TikTok</em></p>

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23-year-old reveals why she's chosen to end her life

<p>23-year-old Lily Thai has made the crippling decision to end her life.</p> <p>The Adelaide native, who suffers from Ehlers Danlos Syndrome (EDS), will use recently passed voluntary assisted dying laws after signing the final paperwork a week prior.</p> <p>In January 2023, South Australia legalised assisted dying with the government funnelling in $18 million over the next five years to support safe access to the service.</p> <p>“I realised that I can’t have any more anaesthesia, so I (couldn’t) have any more feeding tube changes (or) surgeries,” Thai told <em>The Advertiser</em>.</p> <p>EDS is a debilitating genetic condition which has left the 23-year-old completely bedridden and in constant pain.</p> <p>It affects her joints, skin and walls of the blood vessels so severely she is reliant on her father as a caregiver to do everything for her, “even the most intimate things”.</p> <p>Doctors will administer an IV medication that will terminate the young woman’s life within 10 seconds.</p> <p>“I’ll no longer have any pain, I will no longer suffer with any of these issues, and I’ll finally be free of all the suffering that I have endured for so many years.”</p> <p>Thai had initially thought her health deterioration was caused by a spinal fluid leak, but after undergoing treatment to fix it, her condition did not improve and doctors couldn’t give her a definitive diagnosis.</p> <p>As a desperate last measure, she travelled to Sydney to meet a surgeon who “specialised in spinal issues (for) patients with EDS” when she was 21.</p> <p>She was then confined to a halo brace and required a nasal feeding tube as she "couldn’t keep anything down,” and weighed just 40kg.</p> <p>In May 2021, Thai had spinal fusion surgery and just a week later was fitted with a gastro Jejenul feeding tube to vent out stomach acid and secretion.</p> <p>Through her rehab period, hospitals were under strict Covid-19 protocols, so Thai suffered alone without any visitors.</p> <p>“I couldn’t stand not seeing my dad, so I got discharged early,” she said.</p> <p>She was later diagnosed with auto-immune autonomic ganglionopathy — a rare condition where the body’s immune system attacks the nervous system.</p> <p>“The neurologist said that I was in multi-organ failure, but it wasn’t until I had a severe decline after one of my surgeries, (and) when I saw my rehab doctor they found a large lesion of the left side of my brain,” she said.</p> <p>“He suspected I had a type of motor neurone disease.”</p> <p>Thai has spent the past two years at Flinders Medical Centre’s Laurel Hospice, where she shared that most of her days are filled with sleep to avoid being in “excruciating pain”.</p> <p>Healthcare staff there granted one of her final wishes, which was to visit a beach, and so they took Thai in the back of an ambulance to the coastline. </p> <p>An image (at top) shows Lily resting on a bed, enjoying her Maccas fries and looking out at the golden sand and blue water in front of her.</p> <p>While at the hospice, Thai also formed a strong bond with another young woman, Annaliese Holland, who was also suffering a terminal illness at the hospice.</p> <p>The pair say young people with a terminal illness often mourn the “life (they) never got to have.”</p> <p>“For elderly or older people, (they) have memories to look back on to laugh about and cry about,” Holland said. “But for a young person in palliative hospice, you haven’t formed many of them.”</p> <p>“You never do the normal things like going to your high school graduation,” Thai said.</p> <p>“What makes me sad is that … you just want to push on, but at the same time it’s really hard because you know you won’t have babies or any of that,” Holland said.</p> <p>Holland has vowed to do everything in her power to make Thai’s last days in hospice more bearable.</p> <p>“All I can do is brush her (Lily’s) hair or moisturise her legs. I just want her to know that I’m there and people care,” a tearful Holland said.</p> <p>Thai has been able to plan parts of her own funeral and has been busy saying goodbye to family and friends.</p> <p>As part of her legacy, she’s inviting donations for palliative research to The Hospital Research Foundation on her memorial card to be given to funeral attendees.</p> <p><em>Image credit: Facebook</em></p>

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"Broke my heart": Mum's outrage at stranger's comment about her disabled son

<p>A Sydney mother has shared her shock and outrage after a stranger made "rude" comments about her son. </p> <p>Tori Boyadji and her friend Lyndal were walking through Collaroy Park in Sydney's north with Tori's two-year-old son Isaac, who has Down syndrome. </p> <p>The friends were stopped by a woman who looked at Isaac and exclaimed, "Ohh is this a little downsie?"</p> <p>Tori, 28, went on to recount how the stranger said she would "never want a kid with Down syndrome" herself.</p> <p>Ms Boyadji told <a href="https://www.dailytelegraph.com.au/news/nsw/sydney-mum-tori-boyadji-shocked-by-strangers-taunt-to-her-son/news-story/d8e3ee46ad9ed07ded6776987ff220f7" target="_blank" rel="noopener"><em>The Daily Telegraph</em></a> that the stranger's comments left her feeling very upset. </p> <p>"Lyndal and I just looked at each other in disbelief – I’m not easily offended but this comment truly broke my heart," she said.</p> <p>"Why would you say that to two mums with their adorable kids right there?"</p> <p>Tori said Isaac is just like any other toddler, as he loved The Wiggles and going to the beach. </p> <p>"He also happens to have Down syndrome — but this is the least interesting part of him," she said.</p> <p>Rhonda Faragher, Associate Professor of Inclusion and Diversity at Queensland University, weighed in on the exchange, and shared her thoughts that the major issue lays with the fact that people believe those with Down syndrome need to change in some way. </p> <p>"In my view, it's not the language itself, it's what's behind the language," she explained to <a href="https://au.news.yahoo.com/sydney-mums-shock-at-strangers-rude-comment-about-disabled-son-073246046.html" target="_blank" rel="noopener"><em>Yahoo News Australia</em></a>.</p> <p>"That somebody in the community would feel [a child with Down Syndrome] would not be a child they'd like to have in their family without even knowing the child."</p> <p>"I think it's [disappointing] that other people don't understand that this is not a tragedy," she added. "Having a person with Down syndrome in your family, in your life, is actually a terrific blessing."</p> <p><em>Image credits: Instagram </em></p>

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Beloved singing star reveals condition that may force early retirement

<p>Scottish singer and songwriter Lewis Capaldi has opened up about his battle with Tourette’s syndrome, admitting it could lead him into early retirement.</p> <p>The <em>Before You Go</em> singer, 26, has shared details of his condition with fans in the past, making light of it online, even going viral on TikTok for how he handles his on-stage tics.</p> <p>Speaking to The Sun, the 26-year-old revealed it is a “very real possibility” he will have to put the mic down if his condition deteriorates.</p> <p>"It's triggered by stress, anxiety, and excitement. Basically, any strong emotion, you're f—ed," Capaldi, who was diagnosed with Tourette’s in 2022, said.</p> <p>"There are times it has been really bad and I've wondered whether I can continue to do this with the stress, anxiety, and Tourette's. It all comes as a direct result of doing this job.”</p> <p>Capaldi, renowned online for his self-deprecating sense of humour and cheeky commentary, said he has worried that the crowd may mistake his tics for drug use.</p> <p>He also revealed he may have to stop making music and performing if the condition progresses.</p> <p>"This isn't drugs, and I've had that accusation on nights out. People have asked me directly, 'Are you on drugs, is it cocaine?'" He explained.</p> <p>"If it got to a point where my quality of life was drastically diminished, I'd just have to quit.”</p> <p>Capaldi’s powerhouse voice has thrown him into the mix with UK greats including Sir Elton John and Ed Sheeran.</p> <p>He said that John has been a pillar of support during his struggles with anxiety, telling The Sun that the <em>Rocket Man</em> singer emails him regularly.</p> <p>In early 2023, a clip from Capaldi’s concert made waves online after fans helped him finish the song as he experienced a tic attack on stage.</p> <p>Capaldi was singing his perhaps most famous song, Someone You Loved, at a concert in Germany on February 21.</p> <p>Audience members were quick to notice the singer struggling, so they continued the song from where he left off, with him holding onto the microphone in an attempt to compose himself.</p> <p>In 2022, Capaldi shared his diagnosis with fans on Instagram.</p> <p>"I do the shoulder twitch a lot. And you see underneath every TikTok and stuff, people are like, 'Why is he twitching?', which is fine. Curiosity is fine. I get it," he said.</p> <p>"I haven't really learned much about it. I'm learning. I've got Botox on my shoulder to stop it moving. It worked for a bit," he said.</p> <p>"The worst thing about it is when I'm excited, I get it; when I'm stressed, I get it; when I'm happy, I get it. It happens all the time.</p> <p>"Some days it's more painful than others and some days it's less painful. It looks a lot worse than it is. Sometimes it's quite uncomfortable … but it comes and goes."</p> <p><em>Image credit: Getty</em></p>

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