Latest news with #GoodFridayAppeal
Sydney Morning Herald
03-05-2025
- Politics
- Sydney Morning Herald
Our shared humanity rises above all
In the space of five minutes on a recent Monday morning I was reminded of how precious it is to belong to the human family. Coming out of the grocery store, a woman from my parish waved cheerily to me. Thirty seconds later at the lights another woman called out 'Hello!' from her car. A minute later a complete stranger said 'You look fabulous' as I rounded the corner into my coffee shop, perhaps because I was decked out in layers of pink. There I met my neighbour and his walking group, and we had a bit of a chat about the weather. Five minutes and the world was on my side. Yesterday, across the nation, we voted. Only each one of us knows what we put on that ballot paper in the cardboard confessional that is the voting booth. We have thought about where our core values lie and what aligns most generally with that. We know that whatever the outcome, there will have to be compromise and good will to achieve consensus on plans for the future of our nation. We hope that our elected representatives care that the common good prevails and that they ensure that fairness, equity, access and justice are the goals for the decision-making that affects us all. And after all the point-scoring and kissed babies and exhausting analysis, we resume our lives today. We will get on with being neighbourly because that's how we live day to day. That shared humanity is in the greeting of the young Indian barista who sees me most mornings as I bustle in to read the paper. It is the 612 bus driver who waits for the elderly passenger to be seated before driving off. It is the amiable shuffle and chat of those who await the opening of the door at the Balwyn library at 10am and who rush in to read the papers. It is my brother who donates $50 each year to the Good Friday Appeal for the Royal Children's Hospital. It is the quiet gathering of strangers standing next to each other at the local dawn service on Anzac Day. It is the memory of mateship that lives on and grows in meaning. Such is life in the suburbs and country towns across the nation. We are loving our neighbours in the incidental ebb and flow of our lives. We have our inner circle, but the outer circle also adds joy and colour to our days. Whenever we take part in something, and make an effort to engage with others, we are adding a new richness to our lives, and the lives of others. We become more expansive, kinder, gentler, less judgemental. This is where I cast my vote. I have faith in the goodness and decency of people. I believe in the best of them, the best of us.
The Age
03-05-2025
- Politics
- The Age
Our shared humanity rises above all
In the space of five minutes on a recent Monday morning I was reminded of how precious it is to belong to the human family. Coming out of the grocery store, a woman from my parish waved cheerily to me. Thirty seconds later at the lights another woman called out 'Hello!' from her car. A minute later a complete stranger said 'You look fabulous' as I rounded the corner into my coffee shop, perhaps because I was decked out in layers of pink. There I met my neighbour and his walking group, and we had a bit of a chat about the weather. Five minutes and the world was on my side. Yesterday, across the nation, we voted. Only each one of us knows what we put on that ballot paper in the cardboard confessional that is the voting booth. We have thought about where our core values lie and what aligns most generally with that. We know that whatever the outcome, there will have to be compromise and good will to achieve consensus on plans for the future of our nation. We hope that our elected representatives care that the common good prevails and that they ensure that fairness, equity, access and justice are the goals for the decision-making that affects us all. And after all the point-scoring and kissed babies and exhausting analysis, we resume our lives today. We will get on with being neighbourly because that's how we live day to day. That shared humanity is in the greeting of the young Indian barista who sees me most mornings as I bustle in to read the paper. It is the 612 bus driver who waits for the elderly passenger to be seated before driving off. It is the amiable shuffle and chat of those who await the opening of the door at the Balwyn library at 10am and who rush in to read the papers. It is my brother who donates $50 each year to the Good Friday Appeal for the Royal Children's Hospital. It is the quiet gathering of strangers standing next to each other at the local dawn service on Anzac Day. It is the memory of mateship that lives on and grows in meaning. Such is life in the suburbs and country towns across the nation. We are loving our neighbours in the incidental ebb and flow of our lives. We have our inner circle, but the outer circle also adds joy and colour to our days. Whenever we take part in something, and make an effort to engage with others, we are adding a new richness to our lives, and the lives of others. We become more expansive, kinder, gentler, less judgemental. This is where I cast my vote. I have faith in the goodness and decency of people. I believe in the best of them, the best of us.
West Australian
23-04-2025
- Health
- West Australian
Gary Ablett Jr and wife Jordan share emotional journey of six-year-old son Levi's Menkes disease diagnosis
For over five years, Gary Ablett Jr and his wife Jordan shielded their son Levi's medical struggles from public view, navigating specialists, therapies, and unspoken fears. Now, as Levi turns six, the couple has broken their silence in a raw interview, peeling back layers of grief and resilience tied to a diagnosis. Jordan, 33, has described the moment in May 2020 when doctors identified Menkes disease, a rare genetic disorder disrupting copper metabolism, as a turning point that 'completely changed' their lives, speaking to the Herald Sun. 'It was shocking… of course it was hard to first accept,' Jordan admitted while recalling the prognosis: Neuro-degeneration, connective tissue degradation, and a life expectancy rarely surpassing early childhood. Levi's condition, caused by mutations in the ATP7A gene, manifests in sparse hair, seizures, and developmental delays. Most untreated children die before age three, but copper histidinate injections, started early, offer a fragile lifeline. The medication 'slows the progression,' Jordan said, emphasising that every milestone, like Levi reaching six, feels special. Behind closed doors, the Abletts have grappled with Levi's inability to speak or walk independently. 'He's changed me' Jordan shared in a 2021 interview with the Good Friday Appeal, referencing the constant vigilance against aspiration risks that could send food into his lungs. Regular telehealth check-ins with Melbourne's Royal Children's Hospital punctuate their routine, with respiratory health dominating concerns, according to the same interview. Yet amid the medical jargon, Jordan clings to Levi's 'constant sunshine', as she posted on Instagram, also his laughter, his bond with younger sister Grace, and his quiet determination. 'His life has been a message,' she insisted in the Good Friday appeal article, rejecting pity. In her upcoming memoir One Day At A Time, Jordan details the 'happy and sad tears' of parenting a terminally ill child, framing their journey as a call to cherish fleeting moments, as announced in her October 2024 social media posts ahead of the book's April 2025 release. With Menkes having no cure, the Abletts now channel their energy into advocacy, hoping their story softens the isolation felt by similar families through initiatives like Jordan's 2022-launched House of Hope. Teasing her memoir on Instagram Jordan wrote: 'I am so excited to finally share with you all that I have been working hard behind the scenes for almost one year now, writing my very own book!' 'I can't begin to explain how special this feels for me, and for my family, who have journeyed all of life's highs and lows with me, feeling every single bump and joy along the way. There have been plenty of tears cried while writing this book, both happy and sad tears, but being able to share my story, and hopefully encourage others, has made all 'the feels' worth it. 'I hope that by reading my story, parents of children with a disability will feel less alone, more capable, and will, if they don't already, look at their child through a different lens, seeing them as what they are, a genuine treasure!'
Perth Now
23-04-2025
- Health
- Perth Now
Gary Ablett Jr's wife share news of 6yo son's fatal illness
For over five years, Gary Ablett Jr and his wife Jordan shielded their son Levi's medical struggles from public view, navigating specialists, therapies, and unspoken fears. Now, as Levi turns six, the couple has broken their silence in a raw interview, peeling back layers of grief and resilience tied to a diagnosis. Jordan, 33, has described the moment in May 2020 when doctors identified Menkes disease, a rare genetic disorder disrupting copper metabolism, as a turning point that 'completely changed' their lives, speaking to the Herald Sun. 'It was shocking… of course it was hard to first accept,' Jordan admitted while recalling the prognosis: Neuro-degeneration, connective tissue degradation, and a life expectancy rarely surpassing early childhood. Levi's condition, caused by mutations in the ATP7A gene, manifests in sparse hair, seizures, and developmental delays. Most untreated children die before age three, but copper histidinate injections, started early, offer a fragile lifeline. The medication 'slows the progression,' Jordan said, emphasising that every milestone, like Levi reaching six, feels special. Behind closed doors, the Abletts have grappled with Levi's inability to speak or walk independently. 'He's changed me' Jordan shared in a 2021 interview with the Good Friday Appeal, referencing the constant vigilance against aspiration risks that could send food into his lungs. Regular telehealth check-ins with Melbourne's Royal Children's Hospital punctuate their routine, with respiratory health dominating concerns, according to the same interview. Yet amid the medical jargon, Jordan clings to Levi's 'constant sunshine', as she posted on Instagram, also his laughter, his bond with younger sister Grace, and his quiet determination. 'His life has been a message,' she insisted in the Good Friday appeal article, rejecting pity. In her upcoming memoir One Day At A Time, Jordan details the 'happy and sad tears' of parenting a terminally ill child, framing their journey as a call to cherish fleeting moments, as announced in her October 2024 social media posts ahead of the book's April 2025 release. With Menkes having no cure, the Abletts now channel their energy into advocacy, hoping their story softens the isolation felt by similar families through initiatives like Jordan's 2022-launched House of Hope. Teasing her memoir on Instagram Jordan wrote: 'I am so excited to finally share with you all that I have been working hard behind the scenes for almost one year now, writing my very own book!' 'I can't begin to explain how special this feels for me, and for my family, who have journeyed all of life's highs and lows with me, feeling every single bump and joy along the way. There have been plenty of tears cried while writing this book, both happy and sad tears, but being able to share my story, and hopefully encourage others, has made all 'the feels' worth it. 'I hope that by reading my story, parents of children with a disability will feel less alone, more capable, and will, if they don't already, look at their child through a different lens, seeing them as what they are, a genuine treasure!'
News.com.au
23-04-2025
- Health
- News.com.au
‘Shocking': Levi Ablett's condition revealed after six years
Jordan Ablett has for the first time revealed the rare condition son Levi was first diagnosed with five years ago. The wife of Geelong legend Gary Ablett has told The Herald Sun she is now going public with the diagnosis because she believes doing so will provide support for families going through similar issues. FOX FOOTY, available on Kayo Sports, is the only place to watch every match of every round in the 2025 Toyota AFL Premiership Season LIVE in 4K, with no ad-breaks during play. New to Kayo? Get your first month for just $1. Limited-time offer. The couple had previously kept some details of Levi's condition secret, sharing only that their brave son suffers from a rare degenerative illness. Jordan, 33, has now opened up to tell the world her brave six-year-old son has a rare condition called Menkes. The degenerative illness affects Levi's respiratory system and devastatingly results in a shorter life expectancy. Those with Menkes struggle to absorb copper, an essential mineral for the human body. Those that live with low copper levels in their system can face a number of deficiencies, including neurological function. It is unlikely Levi will ever speak and the couple made the difficult decision to not send him to school last year while they continue to care for him. Ablett says it has taken her this long to process everything to a point where she is comfortable talking about Menkes. 'I always knew deep down that I would eventually be open and transparent about it. I don't know what good can possibly come from not being that.' Ablett said. 'I didn't want people to misinterpret me holding onto that information as being ashamed of Levi. It was purely a matter of me just trying and needing to process it all first myself. I knew that once I could do that, I'd be in a position where I could then offer encouragement and hope to others through our journey.' The diagnosis, delivered in May 2020, came around the same time Jordan was caring for her mum before she died of lung cancer the same year. 'It was shocking … of course it was hard to first accept,'' she told The Herald Sun. Ablett is going public with more details of her family's life with her book One Day at a Time being released this month. Levi receives ongoing care through the Royal Children's Hospital in Melbourne and Jordan Ablett has been one of the leading ambassadors for the annual Good Friday Appeal. The daunting challenge of sharing her experiences with readers earlier this year left Jordan in tears after confronting some of the most challenging aspects of the family's dynamics with Levi. 'Not a very glamorous photo, but at least a real one,' Ablett wrote alongside a photo of herself lying down with her hand over her eyes in January. 'This is me wiping my tears in a moment when they wouldn't stop running.' 'I don't normally pick up my phone at a time like this and snap it. But, it felt real, and it captured the reality of how I've been feeling lately. 'During the past month, I've been extra busy working on my book in order for it to be ready in time. The entire task has been a roller coaster, but as I approach the finish line, not once in the process have I felt like I've gone this low as I get closer to it going to print and it becoming so real. 'If I'm to be completely honest with you, not that long ago, I considered slamming the book shut and not publishing it. The feeling of opening myself up to the world is daunting and has brought me unexpected anxiety, something that I've been struggling with and have had to work through. 'I've constantly had to remind myself of the bigger picture in the opportunity to share. I've cried many tears. I've felt overwhelmed, under pressure and exhausted.' Gary Ablett Jr — whose father was a high-flying full forward in the 1980s and 90s — is one of the great players of the modern era. Now 40 years old, Ablett Jr played 357 games for Geelong and the Gold Coast, winning two flags with the Cats and a Brownlow Medal with each of his clubs. He and Jordan also have a daughter Grace and son Ezra.
