Heartwarming reason WA teen is set to leap out of plane
A young thrillseeker is preparing to jump out of a perfectly good plane at 14,000 feet to honour the woman synonymous with skydiving for cancer fundraising in WA — his grandmother.
Jarrah Benson, 16, is counting down the days to June 14 when he will participate in Leap for Life — formerly known as Jump for Jane — an annual fundraising event organised by Breast Cancer Care WA.
The skydiving event serves as a tribute to Jane Loring, Jarrah's 'nin', who was a member of the Breast Cancer Care WA board before she died in 2013 after a long battle with breast cancer, aged just 57.
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'Its going to be awesome,' Jarrah told PerthNow.
'I have wanted to jump ever since I saw Dad do it in 2013, but Mum wouldn't let me. This year she said yes, so I am stoked.' Jarrah remembers his grandmother as a caring person with a big heart but said she would not have approved of him jumping out of a plane. Credit: Supplied
Jarrah remembers his grandmother as a caring person with a big heart but said she would not have approved of him jumping out of a plane.
'She wouldn't want me to jump, she would be so scared if she knew, she would tell me not to do it,' the Rossmoyne Senior High School student said.
Jarrah was only five when his grandma died but he still holds fond memories of her close to his heart.
'We always used to go to her house in Subiaco and just muck around the garden,' he said.
'She'd put out these little crystals and we would have to find them. She would be sitting on the couch outside and we would run up to her and show her when we found them.
'Purple was her favourite colour so we would try to find those first, but I remember she would always say they were super rare.' Jarrah is jumping with his best friend James O'Sullivan — who is scared of heights — in Jurien Bay just days before their Year 11 midyear exams. Credit: Andrew Ritchie / The West Australian
Jarrah is jumping with his best friend James O'Sullivan — who is scared of heights — in Jurien Bay just days before their Year 11 midyear exams.
The pair have already raised more than $4000 but are hoping to hit their target of $5000 before the big day.
This will mark the first year the event is running as Leap for Life but Breast Cancer Care WA said the new name did not erase the memory of Jane.
'This skydive remains a celebration of Jane's courage and her dedication to helping those impacted by breast cancer,' a spokesperson said.
'Though the event is now called Leap for Life, we remain deeply committed to honouring the memory of Jane Loring.
'Jane was a valued board member of Breast Cancer Care WA, whose adventurous spirit and passion for supporting others shone brightly. Her legacy continues to inspire us.'
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The Age
3 days ago
- The Age
Could a scan seven years ago have found the sleeping killer in a WA girl's head?
After her birth in the Kimberley in July 2014, Jane* was given a year to live owing to a rare, widespread congenital syndrome that impacted her brain development and ability to see, hear, walk and talk. But 10 years on, with the help of her foster mum, Sharyn Morris, she defied the odds and flourished into a bright little girl who loved the solar system and Elmo. Jane captured the hearts of anyone who met her – including Health Minister Meredith Hammat. This incredible progress was cut short in August last year, when Jane died unexpectedly from a brain bleed. 'She just was developing so well, and there was no reason to believe that anything was going to happen to her,' Morris says. The bleed was thought to have been caused by a blood vessel abnormality hidden in her brain. It was a condition that doctors consistently assured Morris that Jane did not have, and recommended against scans that would have identified it. This was despite years of medical documents that said otherwise, which has led Morris to demand a coronial inquest into her foster daughter's death. Loading In echoes of previous cases of parents' concerns being ignored at WA hospital – such as those of Aishwarya Aswath and Sandipan Dhar – Morris says Jane's death could have been prevented if her requests for more rigorous scans years ago had been acted on. 'She would say to me, '[Jane], grow up to be a big girl' and I'd say, 'Yes, honey, mum promises you, you'll grow up to be a big girl',' Morris says. 'She just never got that opportunity. They took everything away from her and took her away from us. They destroyed our lives as well. It's not right.' Shock death There were only four children in the world with Jane's condition in 2019. Under that she had a multitude of other conditions, including dark skin lesions covering her head and body, tumours on her brain and in her eyes, rickets, autism, and epilepsy. Morris, 61, fostered Jane 10 days after her birth at the request of her biological mother, and was eventually given a special guardianship order, granting her total parental responsibility. Despite obtaining permission from Morris to write this story, this masthead cannot reveal the girl's real name – Jane is a pseudonym – nor show pictures of her because the Department of Communities retains control over publication of information about her. The department refused to allow the publication of her name or images of her on the request of her biological family for cultural reasons. Jane's conditions meant she was a regular visitor to Perth Children's Hospital, but despite this, in recent years her speech and walking were advancing in leaps and bounds thanks to a new medication regimen. Morris says her foster daughter was doing so well, Jane would have probably outlived her, which is why her rapid deterioration last year came as such a shock. Morris had taken Jane to PCH in February and April 2024, complaining of headaches and 'whipper snipper' noises in her head. She was given an MRI during that visit, but doctors found no issues or bleeding. By August, Jane had deteriorated to the point she was no longer walking. 'It would appear that four years after Aishwarya's death that nothing has changed.' Family advocate Suresh Rajan On August 22, Jane suddenly collapsed on the kitchen floor of her Marangaroo home and was rushed to hospital by ambulance. That afternoon was the last time Morris saw her daughter conscious. Doctors reported her seizing, but Morris repeatedly told them they were not like her regular seizures. She says that evening she pleaded with doctors for a CT scan, but it did not happen until early morning the next day. The scan found the bleed. In a clinical incident report known as a SAC1 report, seen by this masthead, doctors noted Jane had to be stabilised before they could do the scan. Jane was eventually found to have had a massive brain bleed, and surgery to drain it was unsuccessful. Morris and her daughters, who had travelled from across the state to see Jane, switched off her life support at 5.55pm on August 24 in time for sunset, which Morris says was her favourite time of day. Ten months on, Morris is yet to receive Jane's official cause of death, but the SAC1 report and her discharge summary both note a blood vessel deformity known as an arteriovenous malformation (AVM) found in her brain after her death may have been the source of the bleed. Conflicting reports AVMs are a tangling of arteries and veins that can disrupt the flow of blood and cause internal bleeding. According to the Sydney Children's Hospital, AVMs usually form during development or shortly after birth. They are often only found if they start bleeding, but can be detected using medical imaging techniques like MRIs, CT scans and angiograms. Loading Angiograms are considered the gold standard of diagnosing AVMs, which are treatable through surgery, radiosurgery or endovascular treatment. Jane's medical documents from 2017 onwards show conflicting reports about the presence of an AVM, and that Morris' repeated requests for an angiogram did not eventuate. In a 2017 letter between neurologists and PCH, obtained by Morris under Freedom of Information laws, it was revealed an MRI taken found a possible AVM, but it was not conclusive and would require an angiogram. The doctor said there was a risk associated with the angiogram, and they had discussed whether they outweighed the risk of the AVM haemorrhaging. That same letter noted Morris was 'very keen' to do the angiogram and the doctor agreed to do it if the Neurological Intervention and Imaging Service of WA supported the move. In a separate letter from December 2018, NIISWA found there was 'no evidence' of an AVM after an enhanced MRI scan. Jane never received an angiogram, and in all her annual care plans until her death, it was noted a brain lesion spotted in the past MRI was 'not an AVM'. 'No further investigation, surgery or intervention is required from NIISWA point of view,' it said. However, discharge summaries from several hospital visits from March 2020 until her final visit, seen by this masthead, clearly stated she did have an AVM. Jane's final discharge notice notes her brain bleed was thought to be caused by a small AVM, which was 'noted on previous MRI image series'. This conflicts with the SAC1 report, where a panel found previous scans 'did not demonstrate an AVM or other vascular lesion for which prior neurological intervention would have indicated.' Morris says she only noticed mentions of the AVM on Jane's discharge summaries after her death. She says had she been alerted sooner, she would have pushed harder for more scans and treatment. 'I'm of the understanding that she doesn't have one. I'm her primary carer. I have a special guardianship order for this child, she's my child. I'm raising her, and I'm told by doctors she doesn't have one,' she says. Morris claims Jane's Indigenous background and disabilities may have been a factor in her struggle to get her properly diagnosed. 'In seven years why did they not do it? Because she's Indigenous, because she was special needs? What are their answers?' she said. 'No faith' in Aishwarya's CARE call During Jane's final days in hospital, Morris did not activate the Aishwarya CARE call system – the system implemented in WA hospitals after Aishwarya Aswath's death in 2021 to help parents escalate their concerns. Both Morris and the clinical incident report concede Morris had made her concerns heard enough to have senior medical staff in the room, but Morris says she had no faith in the system. 'Why would I? I already have [senior doctors] treating my child, and they won't listen to me. Who is going to take notice of me at 10 o'clock at night?' she says. Morris' concerns around the Aishwarya CARE call system concerned family advocate Suresh Rajan, who also helped Aishwarya's parents in the aftermath of their daughter's death. 'When the Aishwarya CARE call was implemented, the then-health minister, now premier, wrote to us to advise that the system was to 'change the culture of the WA Health Service so that patients and caregivers were listened to',' he says. 'It would appear that four years after Aishwarya's death that nothing has changed.' What needs to change Morris is furious at the handling of Jane's care and subsequent investigations, including the SAC1 report, which suggested her death was not preventable. She says she did not have the opportunity to address the panel conducting the report, nor respond to its findings. She wants Hammat's support to launch a coronial inquest into her daughter's care and death and is demanding a raft of changes in hospital accountability. These include more accountability of individual doctor decision-making, laws to force doctors to act on observations and concerns of parents, establishing an independent medical investigation body and more transparency around investigations. 'Parents are right' Health Minister Meredith Hammat, who attended Jane's funeral, confirmed she would reach out to Morris to discuss her concerns, but would not say whether she supported her request for a coronial inquest. '[Jane] was an incredible little girl and loved by many people in our community,' she said. 'I've spoken with Sharyn many times over the years, most recently just a few weeks ago. Sharyn is a strong woman and a fearless advocate, and I'm sorry for her loss. 'I won't discuss the details of our meetings, but it is my firm view that parents and guardians should be listened to. They know their child best. 'Our conversations are ongoing, and I will continue to support Sharyn as both her local member and Minister for Health to ensure she gets the answers she needs.' A Child and Adolescent Health Service spokesman said they could not discuss confidential patient details.
Sydney Morning Herald
3 days ago
- Sydney Morning Herald
Could a scan seven years ago have found the sleeping killer in a WA girl's head?
After her birth in the Kimberley in July 2014, Jane* was given a year to live owing to a rare, widespread congenital syndrome that impacted her brain development and ability to see, hear, walk and talk. But 10 years on, with the help of her foster mum, Sharyn Morris, she defied the odds and flourished into a bright little girl who loved the solar system and Elmo. Jane captured the hearts of anyone who met her – including Health Minister Meredith Hammat. This incredible progress was cut short in August last year, when Jane died unexpectedly from a brain bleed. 'She just was developing so well, and there was no reason to believe that anything was going to happen to her,' Morris says. The bleed was thought to have been caused by a blood vessel abnormality hidden in her brain. It was a condition that doctors consistently assured Morris that Jane did not have, and recommended against scans that would have identified it. This was despite years of medical documents that said otherwise, which has led Morris to demand a coronial inquest into her foster daughter's death. Loading In echoes of previous cases of parents' concerns being ignored at WA hospital – such as those of Aishwarya Aswath and Sandipan Dhar – Morris says Jane's death could have been prevented if her requests for more rigorous scans years ago had been acted on. 'She would say to me, '[Jane], grow up to be a big girl' and I'd say, 'Yes, honey, mum promises you, you'll grow up to be a big girl',' Morris says. 'She just never got that opportunity. They took everything away from her and took her away from us. They destroyed our lives as well. It's not right.' Shock death There were only four children in the world with Jane's condition in 2019. Under that she had a multitude of other conditions, including dark skin lesions covering her head and body, tumours on her brain and in her eyes, rickets, autism, and epilepsy. Morris, 61, fostered Jane 10 days after her birth at the request of her biological mother, and was eventually given a special guardianship order, granting her total parental responsibility. Despite obtaining permission from Morris to write this story, this masthead cannot reveal the girl's real name – Jane is a pseudonym – nor show pictures of her because the Department of Communities retains control over publication of information about her. The department refused to allow the publication of her name or images of her on the request of her biological family for cultural reasons. Jane's conditions meant she was a regular visitor to Perth Children's Hospital, but despite this, in recent years her speech and walking were advancing in leaps and bounds thanks to a new medication regimen. Morris says her foster daughter was doing so well, Jane would have probably outlived her, which is why her rapid deterioration last year came as such a shock. Morris had taken Jane to PCH in February and April 2024, complaining of headaches and 'whipper snipper' noises in her head. She was given an MRI during that visit, but doctors found no issues or bleeding. By August, Jane had deteriorated to the point she was no longer walking. 'It would appear that four years after Aishwarya's death that nothing has changed.' Family advocate Suresh Rajan On August 22, Jane suddenly collapsed on the kitchen floor of her Marangaroo home and was rushed to hospital by ambulance. That afternoon was the last time Morris saw her daughter conscious. Doctors reported her seizing, but Morris repeatedly told them they were not like her regular seizures. She says that evening she pleaded with doctors for a CT scan, but it did not happen until early morning the next day. The scan found the bleed. In a clinical incident report known as a SAC1 report, seen by this masthead, doctors noted Jane had to be stabilised before they could do the scan. Jane was eventually found to have had a massive brain bleed, and surgery to drain it was unsuccessful. Morris and her daughters, who had travelled from across the state to see Jane, switched off her life support at 5.55pm on August 24 in time for sunset, which Morris says was her favourite time of day. Ten months on, Morris is yet to receive Jane's official cause of death, but the SAC1 report and her discharge summary both note a blood vessel deformity known as an arteriovenous malformation (AVM) found in her brain after her death may have been the source of the bleed. Conflicting reports AVMs are a tangling of arteries and veins that can disrupt the flow of blood and cause internal bleeding. According to the Sydney Children's Hospital, AVMs usually form during development or shortly after birth. They are often only found if they start bleeding, but can be detected using medical imaging techniques like MRIs, CT scans and angiograms. Loading Angiograms are considered the gold standard of diagnosing AVMs, which are treatable through surgery, radiosurgery or endovascular treatment. Jane's medical documents from 2017 onwards show conflicting reports about the presence of an AVM, and that Morris' repeated requests for an angiogram did not eventuate. In a 2017 letter between neurologists and PCH, obtained by Morris under Freedom of Information laws, it was revealed an MRI taken found a possible AVM, but it was not conclusive and would require an angiogram. The doctor said there was a risk associated with the angiogram, and they had discussed whether they outweighed the risk of the AVM haemorrhaging. That same letter noted Morris was 'very keen' to do the angiogram and the doctor agreed to do it if the Neurological Intervention and Imaging Service of WA supported the move. In a separate letter from December 2018, NIISWA found there was 'no evidence' of an AVM after an enhanced MRI scan. Jane never received an angiogram, and in all her annual care plans until her death, it was noted a brain lesion spotted in the past MRI was 'not an AVM'. 'No further investigation, surgery or intervention is required from NIISWA point of view,' it said. However, discharge summaries from several hospital visits from March 2020 until her final visit, seen by this masthead, clearly stated she did have an AVM. Jane's final discharge notice notes her brain bleed was thought to be caused by a small AVM, which was 'noted on previous MRI image series'. This conflicts with the SAC1 report, where a panel found previous scans 'did not demonstrate an AVM or other vascular lesion for which prior neurological intervention would have indicated.' Morris says she only noticed mentions of the AVM on Jane's discharge summaries after her death. She says had she been alerted sooner, she would have pushed harder for more scans and treatment. 'I'm of the understanding that she doesn't have one. I'm her primary carer. I have a special guardianship order for this child, she's my child. I'm raising her, and I'm told by doctors she doesn't have one,' she says. Morris claims Jane's Indigenous background and disabilities may have been a factor in her struggle to get her properly diagnosed. 'In seven years why did they not do it? Because she's Indigenous, because she was special needs? What are their answers?' she said. 'No faith' in Aishwarya's CARE call During Jane's final days in hospital, Morris did not activate the Aishwarya CARE call system – the system implemented in WA hospitals after Aishwarya Aswath's death in 2021 to help parents escalate their concerns. Both Morris and the clinical incident report concede Morris had made her concerns heard enough to have senior medical staff in the room, but Morris says she had no faith in the system. 'Why would I? I already have [senior doctors] treating my child, and they won't listen to me. Who is going to take notice of me at 10 o'clock at night?' she says. Morris' concerns around the Aishwarya CARE call system concerned family advocate Suresh Rajan, who also helped Aishwarya's parents in the aftermath of their daughter's death. 'When the Aishwarya CARE call was implemented, the then-health minister, now premier, wrote to us to advise that the system was to 'change the culture of the WA Health Service so that patients and caregivers were listened to',' he says. 'It would appear that four years after Aishwarya's death that nothing has changed.' What needs to change Morris is furious at the handling of Jane's care and subsequent investigations, including the SAC1 report, which suggested her death was not preventable. She says she did not have the opportunity to address the panel conducting the report, nor respond to its findings. She wants Hammat's support to launch a coronial inquest into her daughter's care and death and is demanding a raft of changes in hospital accountability. These include more accountability of individual doctor decision-making, laws to force doctors to act on observations and concerns of parents, establishing an independent medical investigation body and more transparency around investigations. 'Parents are right' Health Minister Meredith Hammat, who attended Jane's funeral, confirmed she would reach out to Morris to discuss her concerns, but would not say whether she supported her request for a coronial inquest. '[Jane] was an incredible little girl and loved by many people in our community,' she said. 'I've spoken with Sharyn many times over the years, most recently just a few weeks ago. Sharyn is a strong woman and a fearless advocate, and I'm sorry for her loss. 'I won't discuss the details of our meetings, but it is my firm view that parents and guardians should be listened to. They know their child best. 'Our conversations are ongoing, and I will continue to support Sharyn as both her local member and Minister for Health to ensure she gets the answers she needs.' A Child and Adolescent Health Service spokesman said they could not discuss confidential patient details.
West Australian
4 days ago
- West Australian
WA-led study offers alternative treatment for bladder cancer patients amid immunotherapy shortage
When Jack Taylor was diagnosed with high-risk bladder cancer at only 20 years old, being told there was a shortage of the potentially life-saving drug he needed was an extra blow. Bladder cancer immune therapy drug Bacillus Calmette-Guérin (BCG), has been subject to shortages across the world since 2013 due to manufacturing issues, meaning patients are missing out on what doctors consider the gold standard treatment for the disease. However, a West Australian-led trial could solve the issue, with the results revealing using the chemotherapy drug mitomycin on top of BCG — meaning not as much of the drug was needed — was a safe and effective alternative treatment. The groundbreaking findings mean doctors from across the country will be able to treat patients with this cancer therapy from now on. The trial, called ANZUP 1301, recruited 501 patients across 17 sites in Australia, including at Perth's Fiona Stanley Hospital, and the UK between 2013 and 2023. The addition of the drug mitomycin meant patients required 40 per cent fewer doses of BCG. Patients also completed their treatment more frequently, suggesting a combination treatment was better tolerated then just the BCG. Bladder cancer is the 11th most common cancer in the country with the survival rate five years after diagnosis only being 57 per cent. Mr Taylor had no signs he was unwell until he noticed blood in his urine — a month later he was diagnosed with bladder cancer. 'It's the last thing you expect as a 20-year-old really. I was a bit in shock and quite uncertain about the future,' he said. 'When I got diagnosed, you're already stressed enough and then when you get told there's this potentially life-saving, disease altering treatment but you might not be able to get it — it's pretty soul crushing.' Mr Taylor was referred to FSH for the trial after undergoing surgery. He still has three months left of BCG treatment to try and beat his cancer but he said being a part of the trial meant he experienced less side effects and was feeling well. 'I think having local access to high quality research is so important, because if this trial wasn't being run here, I wouldn't have been able to participate in it,' he said. 'It's really great to hear that the trials had such fantastic results and will hopefully go on to help so many other people. I think I'm just grateful that I was able to participate. 'For patients, it's always great to have more choice in terms of the treatments.' FSH head of urology and UWA urological research and education professor Dickon Hayne said in a time of global BCG shortages, adopting this treatment could dramatically expand access to life-saving bladder cancer treatment. 'We did look at a subgroup of patients who had the nastiest sort of cancer in that group, and those patients did seem to do better in terms of the cancer being treated when we added the mitomycin,' he said. 'We're still experiencing a serious BCG shortage and that's affecting Western Australia as much as it's affecting the whole globe. 'This treatment will mean that we can treat more patients with a safe and effective treatment than we could before.' The trial was developed through Australian and New Zealand Urogenital and Prostate Cancer Trials Group in collaboration with the National Health and Medical Research Council clinical trials centre.
