Latest news with #Geraldton-based
West Australian
4 days ago
- Health
- West Australian
How a common childhood illness became a death sentence
When Cecily Johnson took her then seven-and-a-half-year-old daughter Laine to hospital with symptoms of confusion and forgetfulness, she didn't expect to be told a common childhood illness had now become a death sentence. Laine had caught — and recovered from — measles as a baby, when she was too young to be vaccinated amid an outbreak of the disease in the 1980s. Seven years later, Laine was diagnosed with subacute sclerosing panencephalitis — a rare, progressive brain disorder that would rob her of her ability to walk, talk and even to see. Despite doctors saying she had just weeks to live, Laine survived — and was cared for by her mother — for another five years. Cecily is one of two mothers who spoke to about the devastating aftermath of their children catching a simple dose of measles. In 1982, Geraldton-based nurse and mother Cecily Johnson was temporarily living in Sydney with her 10-month-old daughter, Laine — her second child, after earlier losing another daughter during birth. 'She was beautiful and, of course, people at the hospital were really excited because they knew what I'd gone through, losing my other daughter,' Cecily tells of Laine's birth. When they needed to temporarily relocate to Sydney, Cecily was not aware there was a measles outbreak sweeping NSW. Measles is one of the world's most contagious diseases. It is airborne and can spread by simply breathing the same air in which an infected person has sneezed or coughed — even up to two hours later. By 1982, the single-dose measles vaccine had been around for little more than a decade and the vaccination rate was still low, only about 70 per cent. Outbreaks — such as the one in NSW at the time which was reported to have hospitalised more than 2000 people — were still common. Measles is so contagious it has one of the highest herd immunity thresholds, National Centre for Immunisation Research and Surveillance (NCIRS) associate director Frank Beard says. 'A herd immunity threshold is the proportion of the population that needs to be immune to a particular disease to reduce the chance of ongoing spread,' Beard explains. 'In Australia we have a target for childhood immunisation coverage of 95 per cent. Assuming that if we get to that level or above that level, then there'll be very little chance of bad outbreaks.' Beard says measles can lead to serious complications including pneumonia and, more rarely, encephalitis — which is 'inflammation of the lining of the brain and can be quite serious and cause death'. 'If you're not immune, then there's definitely a very high risk,' he says. The vaccine is given to babies at 12 months of age and, since 1992, a second dose at 18 months. In high-risk cases it can be given as early as six months old. Laine, who was only 10 months old, contracted the virus while staying in Sydney. 'I was a nurse so I would have had her immunised early but I was not aware of an outbreak,' Cecily says. 'And it wasn't till we got back to Perth that she came out in the rash and straight away I knew it was measles.' But even without being vaccinated, Laine recovered without any problems, Cecily says. 'She wasn't overly sick. She was just a bit miserable, wanting more fluids, wanting to be with mum all the time,' she says. By 1990 Laine's measles infection was long behind her, or so Cecily thought. But at age seven-and-a-half, Laine suddenly forgot how to shower or get into a car. 'She just said, 'I feel dumb. Send me back to preschool',' Cecily said. 'And my friend and I were like, 'Yeah, there's something wrong'.' That kicked off a long and frustrating search for answers during which doctors, who at the time could find nothing wrong with Laine, accused Cecily of lying about her daughter's symptoms — and even of being on drugs. Cecily thought her luck had changed when she ran into a senior specialist, whom she knew, who took her concerns seriously. 'He said, 'One question. Did she have measles as a baby?' And I said, 'Oh yes',' Cecily says. 'And straight away I knew what it was because I had nursed children with this. And I said, 'SSPE?' And he goes, 'That's what I'd be thinking'.' And that is where Cecily's luck ran out. Cecily Johnson and Diane Cowan's stories are available on iHeart and Spotify . After some to-and-from, the specialist was able to see Laine and confirmed a diagnosis of SSPE, or subacute sclerosing panencephalitis — a rare disease that can develop years after someone has had a measles infection. 'He actually said to me, 'She's probably only got two weeks to live at this stage',' Cecily says. Beard says SSPE can be very hard to diagnose because of its general symptoms. 'The measles virus can lie dormant in the brain and then, several years after the infection, it can reactivate,' Beard explains. 'And then that steadily causes deterioration and mental function and physical function, and almost always results in death in due course.' And while, in the very short timeframe in which the specialist had expected Laine to die, she had lost her ability to see, speak and walk, she lived with the condition for another five years. 'When she went blind, she said to me, 'Mum, mum, just let me see your face one more time'. I think that was the hardest thing I've ever, ever heard in my life,' Cecily says, describing her daughter's years battling SSPE as like watching her die a little more each day. The Australian Government's Department of Health, Disability and Ageing says there is no antiviral treatment — drugs which can ease symptoms and slow a disease but are not a cure — for SSPE. But in 1990, Cecily was told about a possible antiviral which was only available in the US. While Cecily tracked it down herself, Laine suffered severe side effects and the treatment had to stop. Caring for Laine alone for five years, Cecily also struggled to get the equipment she needed. As a nurse, she managed to source some outdated hospital gear — but it wasn't easy. And as she cared for Laine, she spoke openly and publicly about SSPE and measles vaccination, which made her a target for anti-vaxxers — both before and after Laine's death. In 1995, Laine passed away, aged 12, in her mother's arms. At her memorial service in Western Australia, anti-vaccine protesters showed up after reading about her death in the local paper. In 1981 — a year before Laine had measles — Diane Cowan's baby son Matthew had also caught and recovered from the illness. He was just six weeks old — like Laine, too young to have been vaccinated — when he contracted measles while in a NSW hospital. And like Laine he had seemed to recover fully and was a happy, at times boisterous, little boy when, soon before his sixth birthday, he began to show symptoms that something else was wrong. Diane says it seemed like any other day when she got a call from Matthew's school saying he was being disruptive in class. 'I went to the school and what I saw was just out of the ordinary,' Diane recalls. 'I could tell that this just wasn't normal.' She rushed him to a doctor but was told she was just being paranoid — especially because her younger son had suffered a stroke. 'He said, 'You can't have two children with an affliction',' Diane says, adding she refused to accept that response and took Matthew to a children's hospital in Sydney. 'I thought it might be epilepsy,' she recalls. 'Not the devastating diagnosis we received.' Tests were done and Matthew was diagnosed, on his sixth birthday — June 15, 1987 — with SSPE. He was given just up to six weeks to live. 'I remember cuddling Matthew in the car all the way home,' Diane says. 'It was pretty horrific.' Just a week after celebrating his birthday, Diane asked her son what he wished for. 'He said, 'All the kids at my school to come to my party',' Diane recalls. 'So all the kids in his school came to his party.' By then the once boisterous little boy who would gleefully push his grandmother off his toy bike was struggling to walk, and soon after developed pneumonia and lost the ability to speak. But, like Laine, Matthew would defy the doctors who said he was likely to be dead within six weeks — except in his case he would survive, unable to walk or talk, for more than three decades. He died in 2022. Diane cared for Matthew mostly on her own, with nurses visiting the house a few times a week, and like Cecily she also struggled to access essential equipment. However, a doctor helped her access an antiviral medication, called isoprinosine and which helped alleviate Matthew's symptoms, until he turned 16. 'We used this medication and I saw a big improvement in Matthew, but it was really hard to convince other people,' Diane recalls. 'I had to run around with the video camera on my hip most of the time, trying to capture all these moments so that I could take it to the doctors and say, 'Hey, this is what Matthew did', because they didn't believe me.' Diane says the medication helped Matthew go from being stiff and expressionless to a little boy who could sit up and smile. Eventually, his condition did deteriorate and 'he ended up with a feeding tube and then he slowly lost control of his bladder'. 'And then he just maintained that. He didn't get any worse. He didn't get any better. He just was Matthew right to the end.' Matthew passed away three years ago, but Diane prefers to remember him as a cheeky little boy. 'Probably three weeks before he passed away, he used to look at me, and I couldn't work out what it was but I think he was telling me it was time. It was time to go,' Diane says. 'I went out for dinner the night before and came home. I kissed him goodnight and everything. And he just went to sleep and didn't wake up.' Over the 42 years Diane dedicated her life to caring for Matthew, she left her job and says she became increasingly isolated — and remains so. 'I still say that I'm socially isolated because trying to get back out in society now is … I just don't fit in, you know, I don't fit into society because I've been out of it for 42 years,' she says. Both Cecily and Diane now share their stories to advocate for vaccinations, and to warn people about the possible later effects of contracting measles — especially now, with vaccination rates slipping and a rise in measles cases coming into Australia. After its introduction to Australia in 1969, the measles vaccine was eventually combined with the rubella and mumps vaccines, creating the MMR vaccine which is now given to children in two doses, usually at 12 months of age and a second dose at 18 months — with the low vaccination rates of the 1980s steadily climbing over the decades since to reach even surpass the herd immunity threshold. But in April this year, NSW Chief Medical Officer Dr Kerry Chant and Paediatric Infectious Diseases specialist Dr Philip Britton issued a public warning as measles cases began to rise. What's troubling medical experts is the combination of global outbreaks and declining vaccination rates here in Australia. While childhood vaccination rates had steadily improved to the point many childhood illnesses — included measles — were declared no longer endemic in Australia, that trend has recently reversed with data now showing a consistent year-on-year decline since the outbreak of COVID-19. However, NCIRS professor Beard stresses this drop isn't necessarily due to vaccine hesitancy, instead it's often a matter of access — although acceptance does also play a part. 'Looking at access barriers, they are practical barriers. So, parents reporting difficulty prioritising vaccination and having difficulties getting to an appointment for vaccination and associated costs,' he explains. 'Then, in terms of acceptance, that's people's concerns about vaccination, about safety and effectiveness. And so, parents are certainly reporting those concerns, those concerns have been around for a long time, to some degree.' But he adds access is very much a key issue today. 'We know that GPs are the main immunisers of young children and we know that GPs are under considerable pressure since the pandemic. It's difficult to get appointments with GPS. It's difficult to find bulk-billing GPs,' he said. MMR vaccines are provided free under the National Immunisation Program, but they are not equally readily available across the country. In NSW, MMR vaccines are available from about 4,000 general practice clinics and community pharmacies, as well as through Aboriginal Medical Services. That's 3,212 more providers than Western Australia, which has just 544 providers in Perth's metropolitan area and only 244 across the state's vast regional areas. In 2014 the World Health Organisation declared Australia had eliminated the endemic spread of measles — meaning the disease was no longer spreading locally. But could that possibly change? 'Measles becoming endemic again is always a concern,' Beard says. 'However, unless we had a substantial and sustained decrease in vaccination further from where we are, that would likely be ... only a risk over a period of decades. 'Obviously, (the declining vaccination rate) is not good and we want to reverse that, rather than just letting it slide. 'But important to note is that the increase in cases of measles in Australia is so low that decreasing vaccination coverage rates in young children is only a very small contributor to that. 'So, most of the cases are due to increasing travel and outbreaks overseas and returning travellers who may not have been fully vaccinated.' If you have concerns regarding measles or SSPE, contact your local General Practitioner. For an emergency, call triple zero (000).
Perth Now
4 days ago
- Health
- Perth Now
How a common childhood illness became a death sentence
When Cecily Johnson took her then seven-and-a-half-year-old daughter Laine to hospital with symptoms of confusion and forgetfulness, she didn't expect to be told a common childhood illness had now become a death sentence. Laine had caught — and recovered from — measles as a baby, when she was too young to be vaccinated amid an outbreak of the disease in the 1980s. Seven years later, Laine was diagnosed with subacute sclerosing panencephalitis — a rare, progressive brain disorder that would rob her of her ability to walk, talk and even to see. Despite doctors saying she had just weeks to live, Laine survived — and was cared for by her mother — for another five years. Cecily is one of two mothers who spoke to about the devastating aftermath of their children catching a simple dose of measles. In 1982, Geraldton-based nurse and mother Cecily Johnson was temporarily living in Sydney with her 10-month-old daughter, Laine — her second child, after earlier losing another daughter during birth. 'She was beautiful and, of course, people at the hospital were really excited because they knew what I'd gone through, losing my other daughter,' Cecily tells of Laine's birth. Laine was born in 1982. Credit: Cecily Johnson When they needed to temporarily relocate to Sydney, Cecily was not aware there was a measles outbreak sweeping NSW. Measles is one of the world's most contagious diseases. It is airborne and can spread by simply breathing the same air in which an infected person has sneezed or coughed — even up to two hours later. By 1982, the single-dose measles vaccine had been around for little more than a decade and the vaccination rate was still low, only about 70 per cent. Outbreaks — such as the one in NSW at the time which was reported to have hospitalised more than 2000 people — were still common. Measles is so contagious it has one of the highest herd immunity thresholds, National Centre for Immunisation Research and Surveillance (NCIRS) associate director Frank Beard says. 'A herd immunity threshold is the proportion of the population that needs to be immune to a particular disease to reduce the chance of ongoing spread,' Beard explains. 'In Australia we have a target for childhood immunisation coverage of 95 per cent. Assuming that if we get to that level or above that level, then there'll be very little chance of bad outbreaks.' Beard says measles can lead to serious complications including pneumonia and, more rarely, encephalitis — which is 'inflammation of the lining of the brain and can be quite serious and cause death'. 'If you're not immune, then there's definitely a very high risk,' he says. The vaccine is given to babies at 12 months of age and, since 1992, a second dose at 18 months. In high-risk cases it can be given as early as six months old. Laine was just 10 months old when she contracted the measles virus. Credit: Cecily Johnson Laine, who was only 10 months old, contracted the virus while staying in Sydney. 'I was a nurse so I would have had her immunised early but I was not aware of an outbreak,' Cecily says. 'And it wasn't till we got back to Perth that she came out in the rash and straight away I knew it was measles.' But even without being vaccinated, Laine recovered without any problems, Cecily says. 'She wasn't overly sick. She was just a bit miserable, wanting more fluids, wanting to be with mum all the time,' she says. By 1990 Laine's measles infection was long behind her, or so Cecily thought. But at age seven-and-a-half, Laine suddenly forgot how to shower or get into a car. 'She just said, 'I feel dumb. Send me back to preschool',' Cecily said. 'And my friend and I were like, 'Yeah, there's something wrong'.' That kicked off a long and frustrating search for answers during which doctors, who at the time could find nothing wrong with Laine, accused Cecily of lying about her daughter's symptoms — and even of being on drugs. Cecily thought her luck had changed when she ran into a senior specialist, whom she knew, who took her concerns seriously. 'He said, 'One question. Did she have measles as a baby?' And I said, 'Oh yes',' Cecily says. 'And straight away I knew what it was because I had nursed children with this. And I said, 'SSPE?' And he goes, 'That's what I'd be thinking'.' And that is where Cecily's luck ran out. Cecily Johnson and Diane Cowan's stories are available on iHeart and Spotify. After some to-and-from, the specialist was able to see Laine and confirmed a diagnosis of SSPE, or subacute sclerosing panencephalitis — a rare disease that can develop years after someone has had a measles infection. 'He actually said to me, 'She's probably only got two weeks to live at this stage',' Cecily says. Before being diagnosed with SSPE, Laine was inseparable from her younger brother. Credit: Cecily Johnson Beard says SSPE can be very hard to diagnose because of its general symptoms. 'The measles virus can lie dormant in the brain and then, several years after the infection, it can reactivate,' Beard explains. 'And then that steadily causes deterioration and mental function and physical function, and almost always results in death in due course.' And while, in the very short timeframe in which the specialist had expected Laine to die, she had lost her ability to see, speak and walk, she lived with the condition for another five years. 'When she went blind, she said to me, 'Mum, mum, just let me see your face one more time'. I think that was the hardest thing I've ever, ever heard in my life,' Cecily says, describing her daughter's years battling SSPE as like watching her die a little more each day. Cecily with Laine in Bali, five months before she was diagnosed with SSPE. Credit: Cecily Johnson The Australian Government's Department of Health, Disability and Ageing says there is no antiviral treatment — drugs which can ease symptoms and slow a disease but are not a cure — for SSPE. But in 1990, Cecily was told about a possible antiviral which was only available in the US. While Cecily tracked it down herself, Laine suffered severe side effects and the treatment had to stop. Caring for Laine alone for five years, Cecily also struggled to get the equipment she needed. As a nurse, she managed to source some outdated hospital gear — but it wasn't easy. And as she cared for Laine, she spoke openly and publicly about SSPE and measles vaccination, which made her a target for anti-vaxxers — both before and after Laine's death. In 1995, Laine passed away, aged 12, in her mother's arms. At her memorial service in Western Australia, anti-vaccine protesters showed up after reading about her death in the local paper. Cecily says Laine and her brother would never leave home without each other. Credit: Cecily Johnson In 1981 — a year before Laine had measles — Diane Cowan's baby son Matthew had also caught and recovered from the illness. He was just six weeks old — like Laine, too young to have been vaccinated — when he contracted measles while in a NSW hospital. And like Laine he had seemed to recover fully and was a happy, at times boisterous, little boy when, soon before his sixth birthday, he began to show symptoms that something else was wrong. Matthew as a toddler with his brother. Credit: Diane Cowan Diane says it seemed like any other day when she got a call from Matthew's school saying he was being disruptive in class. 'I went to the school and what I saw was just out of the ordinary,' Diane recalls. 'I could tell that this just wasn't normal.' She rushed him to a doctor but was told she was just being paranoid — especially because her younger son had suffered a stroke. 'He said, 'You can't have two children with an affliction',' Diane says, adding she refused to accept that response and took Matthew to a children's hospital in Sydney. 'I thought it might be epilepsy,' she recalls. 'Not the devastating diagnosis we received.' Matthew was a cheeky little boy, according to his mother. Credit: Diane Cowan Tests were done and Matthew was diagnosed, on his sixth birthday — June 15, 1987 — with SSPE. He was given just up to six weeks to live. 'I remember cuddling Matthew in the car all the way home,' Diane says. 'It was pretty horrific.' Just a week after celebrating his birthday, Diane asked her son what he wished for. 'He said, 'All the kids at my school to come to my party',' Diane recalls. 'So all the kids in his school came to his party.' By then the once boisterous little boy who would gleefully push his grandmother off his toy bike was struggling to walk, and soon after developed pneumonia and lost the ability to speak. But, like Laine, Matthew would defy the doctors who said he was likely to be dead within six weeks — except in his case he would survive, unable to walk or talk, for more than three decades. He died in 2022. Diane cared for Matthew mostly on her own, with nurses visiting the house a few times a week, and like Cecily she also struggled to access essential equipment. However, a doctor helped her access an antiviral medication, called isoprinosine and which helped alleviate Matthew's symptoms, until he turned 16. 'We used this medication and I saw a big improvement in Matthew, but it was really hard to convince other people,' Diane recalls. 'I had to run around with the video camera on my hip most of the time, trying to capture all these moments so that I could take it to the doctors and say, 'Hey, this is what Matthew did', because they didn't believe me.' Diane says the medication helped Matthew go from being stiff and expressionless to a little boy who could sit up and smile. Matthew was diagnosed with SSPE at age six, and Diane cared for him at home until he died at age 48. Credit: Diane Cowan Eventually, his condition did deteriorate and 'he ended up with a feeding tube and then he slowly lost control of his bladder'. 'And then he just maintained that. He didn't get any worse. He didn't get any better. He just was Matthew right to the end.' Matthew passed away three years ago, but Diane prefers to remember him as a cheeky little boy. 'Probably three weeks before he passed away, he used to look at me, and I couldn't work out what it was but I think he was telling me it was time. It was time to go,' Diane says. 'I went out for dinner the night before and came home. I kissed him goodnight and everything. And he just went to sleep and didn't wake up.' Diane prefers to remember Matthew as a little boy, before his SSPE diagnosis. Credit: Diane Cowan Over the 42 years Diane dedicated her life to caring for Matthew, she left her job and says she became increasingly isolated — and remains so. 'I still say that I'm socially isolated because trying to get back out in society now is … I just don't fit in, you know, I don't fit into society because I've been out of it for 42 years,' she says. Both Cecily and Diane now share their stories to advocate for vaccinations, and to warn people about the possible later effects of contracting measles — especially now, with vaccination rates slipping and a rise in measles cases coming into Australia. After its introduction to Australia in 1969, the measles vaccine was eventually combined with the rubella and mumps vaccines, creating the MMR vaccine which is now given to children in two doses, usually at 12 months of age and a second dose at 18 months — with the low vaccination rates of the 1980s steadily climbing over the decades since to reach even surpass the herd immunity threshold. But in April this year, NSW Chief Medical Officer Dr Kerry Chant and Paediatric Infectious Diseases specialist Dr Philip Britton issued a public warning as measles cases began to rise. What's troubling medical experts is the combination of global outbreaks and declining vaccination rates here in Australia. While childhood vaccination rates had steadily improved to the point many childhood illnesses — included measles — were declared no longer endemic in Australia, that trend has recently reversed with data now showing a consistent year-on-year decline since the outbreak of COVID-19. However, NCIRS professor Beard stresses this drop isn't necessarily due to vaccine hesitancy, instead it's often a matter of access — although acceptance does also play a part. 'Looking at access barriers, they are practical barriers. So, parents reporting difficulty prioritising vaccination and having difficulties getting to an appointment for vaccination and associated costs,' he explains. 'Then, in terms of acceptance, that's people's concerns about vaccination, about safety and effectiveness. And so, parents are certainly reporting those concerns, those concerns have been around for a long time, to some degree.' But he adds access is very much a key issue today. 'We know that GPs are the main immunisers of young children and we know that GPs are under considerable pressure since the pandemic. It's difficult to get appointments with GPS. It's difficult to find bulk-billing GPs,' he said. MMR vaccines are provided free under the National Immunisation Program, but they are not equally readily available across the country. In NSW, MMR vaccines are available from about 4,000 general practice clinics and community pharmacies, as well as through Aboriginal Medical Services. That's 3,212 more providers than Western Australia, which has just 544 providers in Perth's metropolitan area and only 244 across the state's vast regional areas. In 2014 the World Health Organisation declared Australia had eliminated the endemic spread of measles — meaning the disease was no longer spreading locally. But could that possibly change? 'Measles becoming endemic again is always a concern,' Beard says. 'However, unless we had a substantial and sustained decrease in vaccination further from where we are, that would likely be ... only a risk over a period of decades. 'Obviously, (the declining vaccination rate) is not good and we want to reverse that, rather than just letting it slide. 'But important to note is that the increase in cases of measles in Australia is so low that decreasing vaccination coverage rates in young children is only a very small contributor to that. 'So, most of the cases are due to increasing travel and outbreaks overseas and returning travellers who may not have been fully vaccinated.' If you have concerns regarding measles or SSPE, contact your local General Practitioner. For an emergency, call triple zero (000).
7NEWS
4 days ago
- Health
- 7NEWS
How a common childhood illness became a death sentence
When Cecily Johnson took her then seven-and-a-half-year-old daughter Laine to hospital with symptoms of confusion and forgetfulness, she didn't expect to be told a common childhood illness had now become a death sentence. Laine had caught — and recovered from — measles as a baby, when she was too young to be vaccinated amid an outbreak of the disease in the 1980s. Seven years later, Laine was diagnosed with subacute sclerosing panencephalitis — a rare, progressive brain disorder that would rob her of her ability to walk, talk and even to see. Despite doctors saying she had just weeks to live, Laine survived — and was cared for by her mother — for another five years. Cecily is one of two mothers who spoke to about the devastating aftermath of their children catching a simple dose of measles. Laine's story In 1982, Geraldton-based nurse and mother Cecily Johnson was temporarily living in Sydney with her 10-month-old daughter, Laine — her second child, after earlier losing another daughter during birth. 'She was beautiful and, of course, people at the hospital were really excited because they knew what I'd gone through, losing my other daughter,' Cecily tells of Laine's birth. When they needed to temporarily relocate to Sydney, Cecily was not aware there was a measles outbreak sweeping NSW. Measles is one of the world's most contagious diseases. It is airborne and can spread by simply breathing the same air in which an infected person has sneezed or coughed — even up to two hours later. By 1982, the single-dose measles vaccine had been around for little more than a decade and the vaccination rate was still low, only about 70 per cent. Outbreaks — such as the one in NSW at the time which was reported to have hospitalised more than 2000 people — were still common. Measles is so contagious it has one of the highest herd immunity thresholds, National Centre for Immunisation Research and Surveillance (NCIRS) associate director Frank Beard says. 'A herd immunity threshold is the proportion of the population that needs to be immune to a particular disease to reduce the chance of ongoing spread,' Beard explains. 'In Australia we have a target for childhood immunisation coverage of 95 per cent. Assuming that if we get to that level or above that level, then there'll be very little chance of bad outbreaks.' Beard says measles can lead to serious complications including pneumonia and, more rarely, encephalitis — which is 'inflammation of the lining of the brain and can be quite serious and cause death'. 'If you're not immune, then there's definitely a very high risk,' he says. The vaccine is given to babies at 12 months of age and, since 1992, a second dose at 18 months. In high-risk cases it can be given as early as six months old. Laine, who was only 10 months old, contracted the virus while staying in Sydney. 'I was a nurse so I would have had her immunised early but I was not aware of an outbreak,' Cecily says. 'And it wasn't till we got back to Perth that she came out in the rash and straight away I knew it was measles.' But even without being vaccinated, Laine recovered without any problems, Cecily says. 'She wasn't overly sick. She was just a bit miserable, wanting more fluids, wanting to be with mum all the time,' she says. A deadly diagnosis By 1990 Laine's measles infection was long behind her, or so Cecily thought. But at age seven-and-a-half, Laine suddenly forgot how to shower or get into a car. 'She just said, 'I feel dumb. Send me back to preschool',' Cecily said. 'And my friend and I were like, 'Yeah, there's something wrong'.' That kicked off a long and frustrating search for answers during which doctors, who at the time could find nothing wrong with Laine, accused Cecily of lying about her daughter's symptoms — and even of being on drugs. Cecily thought her luck had changed when she ran into a senior specialist, whom she knew, who took her concerns seriously. 'He said, 'One question. Did she have measles as a baby?' And I said, 'Oh yes',' Cecily says. 'And straight away I knew what it was because I had nursed children with this. And I said, 'SSPE?' And he goes, 'That's what I'd be thinking'.' And that is where Cecily's luck ran out. Cecily Johnson and Diane Cowan's stories are available on iHeart and Spotify. After some to-and-from, the specialist was able to see Laine and confirmed a diagnosis of SSPE, or subacute sclerosing panencephalitis — a rare disease that can develop years after someone has had a measles infection. 'He actually said to me, 'She's probably only got two weeks to live at this stage',' Cecily says. Beard says SSPE can be very hard to diagnose because of its general symptoms. 'The measles virus can lie dormant in the brain and then, several years after the infection, it can reactivate,' Beard explains. 'And then that steadily causes deterioration and mental function and physical function, and almost always results in death in due course.' And while, in the very short timeframe in which the specialist had expected Laine to die, she had lost her ability to see, speak and walk, she lived with the condition for another five years. 'When she went blind, she said to me, 'Mum, mum, just let me see your face one more time'. I think that was the hardest thing I've ever, ever heard in my life,' Cecily says, describing her daughter's years battling SSPE as like watching her die a little more each day. The Australian Government's Department of Health, Disability and Ageing says there is no antiviral treatment — drugs which can ease symptoms and slow a disease but are not a cure — for SSPE. But in 1990, Cecily was told about a possible antiviral which was only available in the US. While Cecily tracked it down herself, Laine suffered severe side effects and the treatment had to stop. Caring for Laine alone for five years, Cecily also struggled to get the equipment she needed. As a nurse, she managed to source some outdated hospital gear — but it wasn't easy. And as she cared for Laine, she spoke openly and publicly about SSPE and measles vaccination, which made her a target for anti-vaxxers — both before and after Laine's death. In 1995, Laine passed away, aged 12, in her mother's arms. At her memorial service in Western Australia, anti-vaccine protesters showed up after reading about her death in the local paper. Matthew's story In 1981 — a year before Laine had measles — Diane Cowan's baby son Matthew had also caught and recovered from the illness. He was just six weeks old — like Laine, too young to have been vaccinated — when he contracted measles while in a NSW hospital. And like Laine he had seemed to recover fully and was a happy, at times boisterous, little boy when, soon before his sixth birthday, he began to show symptoms that something else was wrong. Diane says it seemed like any other day when she got a call from Matthew's school saying he was being disruptive in class. 'I went to the school and what I saw was just out of the ordinary,' Diane recalls. 'I could tell that this just wasn't normal.' She rushed him to a doctor but was told she was just being paranoid — especially because her younger son had suffered a stroke. 'He said, 'You can't have two children with an affliction',' Diane says, adding she refused to accept that response and took Matthew to a children's hospital in Sydney. 'I thought it might be epilepsy,' she recalls. 'Not the devastating diagnosis we received.' Tests were done and Matthew was diagnosed, on his sixth birthday — June 15, 1987 — with SSPE. He was given just up to six weeks to live. 'I remember cuddling Matthew in the car all the way home,' Diane says. 'It was pretty horrific.' Just a week after celebrating his birthday, Diane asked her son what he wished for. 'He said, 'All the kids at my school to come to my party',' Diane recalls. 'So all the kids in his school came to his party.' By then the once boisterous little boy who would gleefully push his grandmother off his toy bike was struggling to walk, and soon after developed pneumonia and lost the ability to speak. But, like Laine, Matthew would defy the doctors who said he was likely to be dead within six weeks — except in his case he would survive, unable to walk or talk, for more than three decades. He died in 2022. Diane cared for Matthew mostly on her own, with nurses visiting the house a few times a week, and like Cecily she also struggled to access essential equipment. However, a doctor helped her access an antiviral medication, called isoprinosine and which helped alleviate Matthew's symptoms, until he turned 16. 'We used this medication and I saw a big improvement in Matthew, but it was really hard to convince other people,' Diane recalls. 'I had to run around with the video camera on my hip most of the time, trying to capture all these moments so that I could take it to the doctors and say, 'Hey, this is what Matthew did', because they didn't believe me.' Diane says the medication helped Matthew go from being stiff and expressionless to a little boy who could sit up and smile. Eventually, his condition did deteriorate and 'he ended up with a feeding tube and then he slowly lost control of his bladder'. 'And then he just maintained that. He didn't get any worse. He didn't get any better. He just was Matthew right to the end.' Matthew passed away three years ago, but Diane prefers to remember him as a cheeky little boy. 'Probably three weeks before he passed away, he used to look at me, and I couldn't work out what it was but I think he was telling me it was time. It was time to go,' Diane says. 'I went out for dinner the night before and came home. I kissed him goodnight and everything. And he just went to sleep and didn't wake up.' Over the 42 years Diane dedicated her life to caring for Matthew, she left her job and says she became increasingly isolated — and remains so. 'I still say that I'm socially isolated because trying to get back out in society now is … I just don't fit in, you know, I don't fit into society because I've been out of it for 42 years,' she says. Both Cecily and Diane now share their stories to advocate for vaccinations, and to warn people about the possible later effects of contracting measles — especially now, with vaccination rates slipping and a rise in measles cases coming into Australia. Barriers to vaccination After its introduction to Australia in 1969, the measles vaccine was eventually combined with the rubella and mumps vaccines, creating the MMR vaccine which is now given to children in two doses, usually at 12 months of age and a second dose at 18 months — with the low vaccination rates of the 1980s steadily climbing over the decades since to reach even surpass the herd immunity threshold. But in April this year, NSW Chief Medical Officer Dr Kerry Chant and Paediatric Infectious Diseases specialist Dr Philip Britton issued a public warning as measles cases began to rise. What's troubling medical experts is the combination of global outbreaks and declining vaccination rates here in Australia. While childhood vaccination rates had steadily improved to the point many childhood illnesses — included measles — were declared no longer endemic in Australia, that trend has recently reversed with data now showing a consistent year-on-year decline since the outbreak of COVID-19. However, NCIRS professor Beard stresses this drop isn't necessarily due to vaccine hesitancy, instead it's often a matter of access — although acceptance does also play a part. 'Looking at access barriers, they are practical barriers. So, parents reporting difficulty prioritising vaccination and having difficulties getting to an appointment for vaccination and associated costs,' he explains. 'Then, in terms of acceptance, that's people's concerns about vaccination, about safety and effectiveness. And so, parents are certainly reporting those concerns, those concerns have been around for a long time, to some degree.' But he adds access is very much a key issue today. 'We know that GPs are the main immunisers of young children and we know that GPs are under considerable pressure since the pandemic. It's difficult to get appointments with GPS. It's difficult to find bulk-billing GPs,' he said. MMR vaccines are provided free under the National Immunisation Program, but they are not equally readily available across the country. In NSW, MMR vaccines are available from about 4,000 general practice clinics and community pharmacies, as well as through Aboriginal Medical Services. That's 3,212 more providers than Western Australia, which has just 544 providers in Perth's metropolitan area and only 244 across the state's vast regional areas. Is measles still a concern today? In 2014 the World Health Organisation declared Australia had eliminated the endemic spread of measles — meaning the disease was no longer spreading locally. But could that possibly change? 'Measles becoming endemic again is always a concern,' Beard says. 'However, unless we had a substantial and sustained decrease in vaccination further from where we are, that would likely be ... only a risk over a period of decades. 'Obviously, (the declining vaccination rate) is not good and we want to reverse that, rather than just letting it slide. 'But important to note is that the increase in cases of measles in Australia is so low that decreasing vaccination coverage rates in young children is only a very small contributor to that. 'So, most of the cases are due to increasing travel and outbreaks overseas and returning travellers who may not have been fully vaccinated.'
West Australian
28-05-2025
- General
- West Australian
ATSB release preliminary report into tragic Ogilvie plane crash that killed 67yo pilot Eric Roulston
The pilot killed in a fatal light plane crash earlier this year texted a maintenance worker 18 minutes into the fateful flight that he was worried about the oil temperature, a preliminary report has revealed. The Australian Transport Safety Bureau released a preliminary report on Wednesday outlining the findings collected so far in its investigation into a deadly crash involving a Cessna 150 light aircraft near Ogilvie in the Mid West. About 11.15am on March 21, 2025, a motorist reported that a Cessna 150M singe-engine aircraft named VH‑WWU had crashed into terrain in Ogilvie, about 84km north of Geraldton. The pilot, 67-year-old Eric 'Rollo' Roulston — a stalwart of the regional aviation scene who operated a charter business out of Shark Bay — was the sole occupant of the aircraft and did not survive the crash. According to ATSB's preliminary report, the aircraft had departed Geraldton Airport on a planned ferry flight to Shark Bay, taking off roughly 75 minutes before the wreckage was reported. Eighteen minutes into the flight, Mr Roulston texted a staff member at a Geraldton-based maintenance organisation that had released the aircraft from maintenance three days prior. 'In the text, the pilot was positive about the aircraft's performance, but noted a slightly higher than usual oil temperature,' ATSB chief commissioner Angus Mitchell said. 'The temperature shown in the photo was towards the upper end of the normal range, but below the 240°F maximum oil temperature limit.' Mr Roulston's text message read: 'WWU flies beautiful, smooth, and tight. Oil temp a little high for a cool day so we might have to look at fitting those coolers back onto WWU. I'd hate to see the rings suffer.' The report stated the maintenance worker acknowledged the message and sent a reply, which was delivered to Mr Roulston's phone at 10.18am, indicating the device was still functioning at that time. Witnesses at Geraldton Airport said Mr Roulston appeared unwell prior to take-off, and he had reportedly mentioned experiencing gastroenteritis in the days leading up to the flight. However, witnesses did not observe any obvious speech or physical impairments at the time. 'The ATSB's ongoing investigation will include the collection and review of all available medical history and post-mortem information for the pilot,' Mr Mitchell said. 'It will also include examination and review of all the other evidence gathered, including CCTV and CTAF recordings, aircraft, pilot and operator documentation, witness reports, the aircraft's maintenance history, and the evidence gathered at the accident site itself.' Initial ATSB findings show the wreckage trail stretched about 23m. Impact marks suggest the aircraft struck the ground at high speed in a nose-down position, with no post-impact fire recorded. 'No pre-impact defects were identified and bending and damage to the propeller was consistent with the engine running at the time of impact,' Mr Mitchell said. Weather conditions on the day of the crash were clear, with light winds of up to 5kt and a temperature of 34C. In a tragic twist, Mr Roulston's 23-year-old son Bradleigh, also a pilot, lost his life in an another aviation tragedy while on a goat-culling operation in the Gascoyne 17 years ago. A final report, including safety analysis and findings, will be released by the ATSB at the conclusion of its investigation.
West Australian
26-05-2025
- General
- West Australian
Mid West trio presented with respective medals following Australia Day honours
Australia Day honours for a Mid West trio were officially presented at a ceremony earlier this month, recognising their significant contributions to the community. On Australia Day this year, Geraldton resident Peter Stratford OAM and Jurien Bay's Robin Randall OAM were awarded their respective Medals of the Order of Australia, with the medals officially handed over at Government House by WA Governor Chris Dawson. Mr Stratford, who has lived in Geraldton for the past 20 years, has held a number of roles within the community. In particular, his contribution to the Drummond Cove Progress Association and Fishability contributed heavily to his nomination. His volunteering record is extensive, having previously been a career firefighter in NSW. Mr Stratford previously told the Geraldton Guardian the honour was a nod to all volunteers who gave their time for noble causes. 'I think there are a lot of people around Geraldton, volunteers, different services, different organisations,' he said. 'So I'm accepting this on behalf of all the volunteers and services — police, fire brigade, ambulance, doctors, everything. 'There are a lot of worthy recipients around Geraldton who dedicate enormous amounts of time for no pay or anything. They just do it because they really, really like to help people.' Jurien Bay's Robin Randall was honoured posthumously, following his significant contribution in the Shire of Dandaragan. He was recognised most notably through his service to Marine Rescue Jurien Bay, where he volunteered for more than 30 years. His daughter Sandra said it was the epitome of her father's character. 'He saw there was a need for radio operators and when he threw himself into anything, he did so wholeheartedly,' she said. 'He took on pretty much every single role there was. He did his cert four so that he could do the official training. 'He loved it and lived it, he was down at the base almost every day during the summer.' Meanwhile, another Australia Day honour went to Geraldton-based paramedic Nic Chadbourne ASM. The 44-year-old was one of the first community paramedics, and was awarded the Ambulance Service Medal on Australia Day. Over 17 years, Mr Chadbourne has been invaluable when responding to emergencies and disasters over his paramedic career, including assisting in 2021 through cyclone Seroja.
