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Daily Mirror
07-05-2025
- Health
- Daily Mirror
'Our sister died at 31 with dementia - childhood signs we dismissed as ditsy'
Gemma Illingworth sadly passed at the young age of 31 from a common condition, but the form she had was rare and unusual for someone her age - 'It's the most cruel disease' For Ben and Jess Illingworth, life changed forever when their sister, Gemma Illingworth, was diagnosed with a rare form of dementia at just 28 years old. "Gemma lived a normal life for the first 27 years of her life. And now she's gone," she heartbreakingly shared. This year, the siblings ran the London Marathon alongside Gemma's best friend, Ruth Pollitt, 32, to raise money for the National Brain Appeal and Rare Dementia Support (RDS). In 2021, Gemma was diagnosed with Posterior Cortical Atrophy (PCA), a rare form of dementia that affects the parts of the brain responsible for visual and spatial processing. It meant that, over time, Gemma lost her ability to see properly, move independently and carry out everyday tasks. There are around 982,000 people living with Dementia in the UK, and age is the biggest known risk factor for the disease. So no one expected someone as young, vibrant and full of life as Gemma to be affected. But her symptoms progressed quickly. She struggled to feed and dress herself, had difficulty swallowing and eventually lost the ability to walk and speak clearly. "She didn't fully understand what was going on" Ben told PA Real Life. "She thought that she could live a normal life, but she couldn't … before we knew it, she couldn't live unassisted." Ben and Jess described Gemma as "ditsy" growing up, sharing that she'd always had trouble with coordination, getting around, or even telling the time. But this didn't raise any serious concerns. "Maybe we were slightly in denial, I don't really know, but it was never in our minds that she was actually ill. It was just that she required a bit more support", Jess said "There weren't enough tell-tale signs to think that she had such a horrendous disease." It was during lockdown that Gemma's symptoms became impossible to ignore. She couldn't process what was on her screen - a task she'd done effortlessly before. She stopped working and sought answers from professionals. What may have been thought of as a vision issue that could be fixed with glasses led her to complete a series of neurological tests. In April 2021, a brain scan confirmed there was something seriously wrong - doctors even assumed it was a tumour. It wasn't until later that year, following more brain scans, cognitive assessments and spinal fluid tests, that Gemma was diagnosed with PCA in November 2021. Gemma's family were "devastated", while "she was ecstatic." Jess said. She thought, "They know what's wrong with me - we can fix it. She didn't really understand what it meant, but in a way, that was a blessing in disguise." Before she became unwell, Gemma lived a healthy 'normal' life. She studied at Leeds College of Art and London Metropolitan University, then worked in New York and London. However, when her condition worsened, she moved to Manchester to be closer to family. Her mum, Susie, helped her with everyday tasks - ensuring the shower was off, making sure her clothes were on correctly. Still, she had to phone her mum up to "20 times a day for support." "This all had to be subtle as I wanted her to have independence for as long as it was safe", her mother, Susie, said. "Once she had the diagnosis, it was really only going to go one way. We didn't know it was going to be that quick," Ben shared. "It's the most cruel disease I think in the whole world," added Jess. But despite the horrible condition slowly taking their sister and daughter away from them, there were parts of Gemma that would always shine through. "Up until the very end, there were parts of her that sort of remained … you could have a lot of difficult hours, but you could still get a laugh out of her," Ben said. "She had a bit of a wicked sense of humour which definitely didn't go away." Gemma passed away at the age of 31 in November last year at home, surrounded by her family. Exactly five months later, her two siblings and best friend honoured her memory by running the London Marathon. They signed up while Gemma was still alive and had already raised £28,000 through a sponsored walk in June 2023. Running the marathon was a way to "raise as much money for RDS so that they can try and prevent stuff like this happening again." "They couldn't cure Gemma, but they helped us navigate it the best way we could." Ben said. Jess also explained that the end goal was "do it for Gemma, make her proud." Though they started the race in different waves, the trio managed to find each other during the run and finish it together, raising more than £19,000 for RDS so far. To support their run, visit:
Scottish Sun
07-05-2025
- Health
- Scottish Sun
Our sister died from dementia at just 31 years old – we thought she was just ‘ditsy' we had no clue
A SIBLING duo whose sister died from a rare form of dementia at just 31 years old say there weren't enough tell-tale signs to think that she had such a horrendous disease. Gemma Illingworth, from Manchester, was 28 when she was diagnosed with posterior cortical atrophy (PCA), a rare form of dementia, in 2021. 5 Gemma Illingworth (middle) was diagnosed with posterior cortical atrophy (PCA), a rare form of dementia, in 2021 Credit: PARealLife 5 Her family described Gemma as being "disty" since childhood Credit: PARealLife PCA causes parts of the brain responsible for visual and spatial information processing to degenerate, which caused Gemma to lose her ability to see and physically function independently. Her brother and sister, Ben Illingworth, 34, and Jess Illingworth, 29, described Gemma as 'ditsy' since childhood, struggling with simple tasks such as her sight, co-ordination, sense of direction and ability to tell the time, but said these characteristics did not raise concerns about her health. Gemma's difficulties worsened during lockdown when she became unable to see or process her screen at home, prompting her to stop working. She completed a series of neurological tests which led to her dementia diagnosis. Following her diagnosis in 2021, Gemma's condition gradually worsened – she lost her ability to function independently, including having trouble feeding herself, swallowing, speaking and walking. Gemma died on November 27 last year, aged 31. Exactly five months later, Ben, Jess, and Gemma's best friend Ruth Pollitt, 32, ran the London Marathon to raise money for the National Brain Appeal and Rare Dementia Support (RDS). Ben said: 'She didn't fully understand what was going on, and she thought that she could live a normal life, but she couldn't…before we knew it, she couldn't live unassisted. 'Once she had the diagnosis, it was really only going to go one way. We didn't know it was going to be that quick. 'Gemma lived a normal life for the first 27 years of her life. And now she's gone.' Susie Illingworth, Gemma's mum, said: 'The demise was utterly heartbreaking.' The 14 science-backed ways to prevent dementia Jess added: 'It's the most cruel disease I think in the whole world.' Before becoming ill, Gemma lived a healthy, independent life. She studied at Leeds College of Art and London Metropolitan University, then worked in New York and London. Gemma moved to Manchester to live closer to her family, initially living independently, but she started requiring increasing levels of support from her parents. Jess said: 'Maybe we were slightly in denial, I don't really know, but it was never in our minds that she was actually ill. It was just that she required a bit more support. 'There weren't enough tell-tale signs to think that she had such a horrendous disease.' Things got worse during lockdown In 2020 Gemma was working for an insurance company, but when lockdown was enforced, she struggled to work from home as she had problems seeing and processing information on screens. Because PCA affects the messaging from the brain to the eyes, Jess said Gemma's struggle with her vision could not be fixed with glasses. Gemma was signed off work in December 2020 for anxiety and depression, but eventually had to stop working because of struggling with her sight and mood. She stopped working but stayed living away from home, requiring increasing levels of support from her flatmate and parents. They regularly checked on Gemma, helping with tasks including ensuring the shower and cooker were turned off and her clothes were on correctly, and she often phoned her mum up to 20 times a day for support. Susie said: 'This all had to be subtle as I wanted her to have independence for as long as it was safe.' Getting diagnosed Gemma moved home when she could no longer complete everyday tasks which required motor and cognitive skills, including changing bed sheets, getting dressed, and arriving to appointments on time. In April 2021 Gemma had a brain scan, which Ben said 'unfortunately confirmed that there was something quite substantially wrong with her brain', which doctors first thought was a tumour. Gemma was referred to University College London (UCL) hospital for further brain scans, cognitive, and spinal fluid tests. Aged 28, Gemma was diagnosed with PCA in November 2021. Jess said the family were 'devastated' by the diagnosis, but Gemma was 'ecstatic' because she thought 'they know what's wrong with me, we can fix it'. Gemma 'didn't know what it really meant, but that was obviously a blessing in disguise', said Jess. 'Her wicked sense of humour definitely didn't go away' Following her diagnosis in 2021, Gemma's condition gradually worsened and her illness came to affect every aspect of her life. She gradually lost her ability to function independently, including feeding herself, swallowing, speaking and walking as her illness worsened. Gemma never stayed in hospital and was cared for at home by her family. Ben said: 'Up until the very end, there were parts of her that sort of remained…you could have a lot of difficult hours, but you could still get a laugh out of her. 'She had a bit of a wicked sense of humour which definitely didn't go away.' Gemma died surrounded by her family at home on November 27 last year. 5 Before becoming ill, Gemma lived a healthy, independent life Credit: PARealLife 5 Gemma moved to Manchester to live closer to her family, initially living independently, but she started requiring increasing levels of support from her parents - then came her diagnosis Credit: PARealLife 5 Ben, Jess, and Gemma's best friend Ruth Pollitt, 32, ran the London Marathon to raise money for the National Brain Appeal and Rare Dementia Support Credit: PARealLife The team signed up for the London Marathon while Gemma was still alive, and completed other charity fundraisers including a sponsored walk in June 2023, raising £28,000 for the National Brain Appeal. By running the marathon, Ben said: 'We're trying to raise as much money for RDS so that they can try and prevent stuff like this happening again. 'They can put their arms around families like ours. They couldn't cure Gemma, but they helped us navigate it the best way we could.' Ben described the experience of running with his sister and seeing friends and family around the course as 'emotional'. Jess said the end goal was 'do it for Gemma, make her proud'. Although the team were put on different starting waves, they managed to meet and run the marathon together, raising more than £19,000 for RDS so far. To find out more about the JustGiving page, visit:
The Irish Sun
07-05-2025
- Health
- The Irish Sun
Our sister died from dementia at just 31 years old – we thought she was just ‘ditsy' we had no clue
A SIBLING duo whose sister died from a rare form of dementia at just 31 years old say there weren't enough tell-tale signs to think that she had such a horrendous disease. Gemma Illingworth, from Manchester, was 28 when she was diagnosed with posterior cortical atrophy (PCA), a rare form of dementia, in 2021. Advertisement 5 Gemma Illingworth (middle) was diagnosed with posterior cortical atrophy (PCA), a rare form of dementia, in 2021 Credit: PARealLife 5 Her family described Gemma as being "disty" since childhood Credit: PARealLife PCA causes parts of the brain responsible for visual and spatial information processing to degenerate, which caused Gemma to lose her ability to see and physically function independently. Her brother and sister, Ben Illingworth, 34, and Jess Illingworth, 29, described Gemma as 'ditsy' since childhood, struggling with simple tasks such as her sight, co-ordination, sense of direction and ability to tell the time, but said these characteristics did not raise concerns about her health. Gemma's difficulties worsened during lockdown when she became unable to see or process her screen at home, prompting her to stop working. She completed a series of neurological tests which led to her dementia diagnosis. Following her diagnosis in 2021, Gemma's condition gradually worsened – she lost her ability to function independently, including having trouble feeding herself, swallowing, speaking and walking. Advertisement Read more on dementia Gemma died on November 27 last year, aged 31. Exactly five months later, Ben, Jess, and Gemma's best friend Ruth Pollitt, 32, ran the London Marathon to raise money for the National Brain Appeal and Rare Dementia Support (RDS). Ben said: 'She didn't fully understand what was going on, and she thought that she could live a normal life, but she couldn't…before we knew it, she couldn't live unassisted. 'Once she had the diagnosis, it was really only going to go one way. We didn't know it was going to be that quick. Advertisement Most read in Health Graphic Warning 'Gemma lived a normal life for the first 27 years of her life. And now she's gone.' Susie Illingworth, Gemma's mum, said: 'The demise was utterly heartbreaking.' The 14 science-backed ways to prevent dementia Jess added: 'It's the most cruel disease I think in the whole world.' Before becoming ill, Gemma lived a healthy, independent life. She studied at Leeds College of Art and London Metropolitan University, then worked in New York and London. Advertisement Gemma moved to Manchester to live closer to her family, initially living independently, but she started requiring increasing levels of support from her parents. Jess said: 'Maybe we were slightly in denial, I don't really know, but it was never in our minds that she was actually ill. It was just that she required a bit more support. 'There weren't enough tell-tale signs to think that she had such a horrendous disease.' Things got worse during lockdown In 2020 Gemma was working for an insurance company, but when lockdown was enforced, she struggled to work from home as she had problems seeing and processing information on screens. Advertisement Because PCA affects the messaging from the brain to the eyes, Jess said Gemma's struggle with her vision could not be fixed with glasses. Gemma was signed off work in December 2020 for anxiety and depression, but eventually had to stop working because of struggling with her sight and mood. She stopped working but stayed living away from home, requiring increasing levels of support from her flatmate and parents. They regularly checked on Gemma, helping with tasks including ensuring the shower and cooker were turned off and her clothes were on correctly, and she often phoned her mum up to 20 times a day for support. Advertisement Susie said: 'This all had to be subtle as I wanted her to have independence for as long as it was safe.' Getting diagnosed Gemma moved home when she could no longer complete everyday tasks which required motor and cognitive skills, including changing bed sheets, getting dressed, and arriving to appointments on time. In April 2021 Gemma had a brain scan, which Ben said 'unfortunately confirmed that there was something quite substantially wrong with her brain', which doctors first thought was a tumour. Gemma was referred to University College London (UCL) hospital for further brain scans, cognitive, and spinal fluid tests. Advertisement Aged 28, Gemma was diagnosed with PCA in November 2021. Jess said the family were 'devastated' by the diagnosis, but Gemma was 'ecstatic' because she thought 'they know what's wrong with me, we can fix it'. Gemma 'didn't know what it really meant, but that was obviously a blessing in disguise', said Jess. 'Her wicked sense of humour definitely didn't go away' Following her diagnosis in 2021, Gemma's condition gradually worsened and her illness came to affect every aspect of her life. Advertisement She gradually lost her ability to function independently, including feeding herself, swallowing, speaking and walking as her illness worsened. Gemma never stayed in hospital and was cared for at home by her family. Ben said: 'Up until the very end, there were parts of her that sort of remained…you could have a lot of difficult hours, but you could still get a laugh out of her. 'She had a bit of a wicked sense of humour which definitely didn't go away.' Advertisement Gemma died surrounded by her family at home on November 27 last year. 5 Before becoming ill, Gemma lived a healthy, independent life Credit: PARealLife 5 Gemma moved to Manchester to live closer to her family, initially living independently, but she started requiring increasing levels of support from her parents - then came her diagnosis Credit: PARealLife 5 Ben, Jess, and Gemma's best friend Ruth Pollitt, 32, ran the London Marathon to raise money for the National Brain Appeal and Rare Dementia Support Credit: PARealLife Advertisement The team signed up for the London Marathon while Gemma was still alive, and completed other charity fundraisers including a sponsored walk in June 2023, raising £28,000 for the National Brain Appeal. By running the marathon, Ben said: 'We're trying to raise as much money for RDS so that they can try and prevent stuff like this happening again. 'They can put their arms around families like ours. They couldn't cure Gemma, but they helped us navigate it the best way we could.' Ben described the experience of running with his sister and seeing friends and family around the course as 'emotional'. Advertisement Jess said the end goal was 'do it for Gemma, make her proud'. Although the team were put on different starting waves, they managed to meet and run the marathon together, raising more than £19,000 for RDS so far. To find out more about the JustGiving page, visit: Posterior cortical atrophy symptoms Posterior cortical atrophy (PCA) refers to gradual and progressive degeneration of the outer layer of the brain (the cortex) in the part of the brain located in the back of the head (posterior). The symptoms can vary from one person to the next and can change as the condition progresses. The most common symptoms are slowly developing difficulties with visual tasks such as reading a line of text, judging distances, distinguishing between moving objects and stationary objects, inability to perceive more than one object at a time, disorientation, and difficulty manoeuvring, identifying, and using tools or common objects. Some patients experience hallucinations. Other symptoms can include difficulty performing mathematical calculations or spelling, and many people with posterior cortical atrophy experience anxiety, possibly because they know something is wrong. In the early stages of posterior cortical atrophy, most people do not have markedly reduced memory, but memory can be affected in later stages. Source:
Daily Record
07-05-2025
- Health
- Daily Record
Woman died from rare dementia aged 31 as siblings pay courageous tribute
Gemma Illingworth was just 28 when she was diagnosed. A brother and sister pairing who tragically lost their sibling to a rare form of dementia at just 31-years-old courageously completed the London Marathon in her honour. Gemma Illingworth was was only 28 when she got the devastating news that she had posterior cortical atrophy (PCA) in 2021 – an uncommon dementia type that degrades the brain's visual and spatial information processing areas. The condition swiftly stripped Gemma of her vision and her physical independence, eventually robbing her of basic abilities like feeding herself, swallowing, speaking, and walking. Tragically, Gemma passed away on November 27 last year, at the age of 31. Five months to the day from her death, her brother Ben, 34, sister Jess, 29, alongside Gemma's best mate Ruth Pollitt, 32, pounded the tarmac of the capital in the London Marathon. They embarked on this challenge to fundraise for the National Brain Appeal and Rare Dementia Support (RDS). Throughout her life, Gemma, from Manchester, was known to be "ditsy", with Ben and Jess noting her lifelong issues with tasks such as recognising objects and people, coordination, navigation, and even reading time – yet these quirks never pointed towards a serious health issue. But Gemma's condition significantly declined during the Covid lockdown, losing her ability to see or interact with her computer at home, which led to her leaving her job and undergoing numerous neurological evaluations that culminated in her shock diagnosis. Ben revealed to PA Real Life the heart-wrenching journey Gemma faced: "She didn't fully understand what was going on, and she thought that she could live a normal life, but she couldn't ... before we knew it, she couldn't live unassisted. "Once she had the diagnosis, it was really only going to go one way. We didn't know it was going to be that quick. "Gemma lived a normal life for the first 27 years of her life. And now she's gone." Susie Illingworth, Gemma's mother, spoke of the ordeal, saying, "The demise was utterly heartbreaking." Jess also weighed in on the situation, saying, "It's the most cruel disease I think in the whole world." Before becoming seriously ill, Gemma attended Leeds College of Art and London Metropolitan University and went on to work in New York and London. Shae then returned to Manchester to be near family, initially living by herself. However, as her condition worsened, Gemma found herself increasingly reliant on her parents for support. Discussing the subtle onset of her illness, Jess said: "Maybe we were slightly in denial, I don't really know, but it was never in our minds that she was actually ill. It was just that she required a bit more support. "There weren't enough tell-tale signs to think that she had such a horrendous disease." Gemma's challenges continued to mount in 2020 while working for an insurance company, as the lockdown made her job exceedingly difficult due to her inability to process visual information on a screen. Jess explained that post-cortical atrophy (PCA) affected Gemma's brain-eye messaging, meaning corrective glasses would not help with her vision problems. Gemma was forced to stop working due to her health struggles with sight and mood after initially being signed off for anxiety and depression in December 2020. Even though she stopped work, Gemma remained living away from home, relying increasingly on her flatmate and parents' support. Her family would often ensure everything at home was safe and secure, and Gemma would call her mum up to 20 times daily for support. Susie said: "This all had to be subtle as I wanted her to have independence for as long as it was safe." However, Gemma returned to her family home when everyday activities became too challenging for her. In April 2021, Gemma underwent a brain scan which Ben said "unfortunately confirmed that there was something quite substantially wrong with her brain", which doctors first thought to be a tumour. Subsequently, Gemma underwent further evaluations at University College London (UCL) hospital. At 28, she received a diagnosis of PCA in November 2021. Jess reflected that the family felt "devastated" upon receiving the news, whereas Gemma was "ecstatic", believing "they know what's wrong with me, we can fix it". Unaware of the full implications, Jess observed that Gemma's response was a silver lining, notring that Gemma "didn't know what it really meant, but that was obviously a blessing in disguise". Gemma's condition gradually deteriorated following in 2021, impacting every aspect of her daily life. She lost the ability to care for herself, struggling with tasks such as eating, swallowing, speaking and walking as her illness escalated. Despite her worsening health, Gemma never spent time in hospital, instead receiving care at home from her loving family. Ben shared: "Up until the very end, there were parts of her that sort of remained ... you could have a lot of difficult hours, but you could still get a laugh out of her. "She had a bit of a wicked sense of humour which definitely didn't go away." Surrounded by her family, Gemma passed away peacefully at home on November 27 last year. The team had committed to the London Marathon while Gemma was still battling her illness. Additionally, they carried out other charity events including a sponsored walk in June 2023, collectively raising £28,000 for the National Brain Appeal. Ben explained their marathon efforts: "We're trying to raise as much money for RDS so that they can try and prevent stuff like this happening again. "They can put their arms around families like ours. They couldn't cure Gemma, but they helped us navigate it the best way we could." Running the marathon was an emotional journey, especially doing so alongside his sister and having friends and family support them throughout, Ben said. Jess declared the ultimate aim was to "do it for Gemma, make her proud". Though starting in different waves, the team ultimately united to run the marathon together, and so far, they have raised over £19,000 for RDS.
Daily Mirror
07-05-2025
- Health
- Daily Mirror
Woman diagnosed with dementia aged 28 died just three years later
Gemma first spotted the signs while working from home, and had to give up her job A woman who first spotted the signs of dementia aged 28 while working from home died three years later. Gemma Illingworth, from Manchester, was diagnosed with posterior cortical atrophy (PCA), a rare form of dementia, in 2021, while working from home during the pandemic. She died in November last year, and her brother and sister have just completed the London Marathon in her memory, four months after her death at the age of 31. PCA causes parts of the brain responsible for visual and spatial information processing to degenerate, which caused Gemma to lose her ability to see and physically function independently. Following her diagnosis in 2021, Gemma's condition gradually worsened – she lost her ability to function independently, including having trouble feeding herself, swallowing, speaking and walking. Gemma died on November 27 last year, aged 31, and exactly five months later, her siblings Ben Illingworth, 34, Jess Illingworth, 29, and Gemma's best friend Ruth Pollitt, 32, ran the London Marathon to raise money for the National Brain Appeal and Rare Dementia Support (RDS). Ben and Jess described Gemma as "ditsy" since childhood, struggling with simple tasks such as her sight, co-ordination, sense of direction and ability to tell the time, but said these characteristics did not raise concerns about her health. Gemma's difficulties worsened during lockdown when she became unable to see or process her screen at home, prompting her to stop working. She completed a series of neurological tests which led to her dementia diagnosis. Ben told PA Real Life: "She didn't fully understand what was going on, and she thought that she could live a normal life, but she couldn't ... before we knew it, she couldn't live unassisted. Once she had the diagnosis, it was really only going to go one way. We didn't know it was going to be that quick. "Gemma lived a normal life for the first 27 years of her life. And now she's gone." Susie Illingworth, Gemma's mum, said: "The demise was utterly heartbreaking." Jess added: "It's the most cruel disease I think in the whole world." Before becoming ill, Gemma lived a healthy, independent life. She studied at Leeds College of Art and London Metropolitan University, then worked in New York and London. Gemma moved to Manchester to live closer to her family, initially living independently, but she started requiring increasing levels of support from her parents. Jess said: "Maybe we were slightly in denial, I don't really know, but it was never in our minds that she was actually ill. It was just that she required a bit more support. "There weren't enough tell-tale signs to think that she had such a horrendous disease." In 2020 Gemma was working for an insurance company, but when lockdown was enforced, she struggled to work from home as she had problems seeing and processing information on screens. Because PCA affects the messaging from the brain to the eyes, Jess said Gemma's struggle with her vision could not be fixed with glasses. Gemma was signed off work in December 2020 for anxiety and depression, but eventually had to stop working because of struggling with her sight and mood. She stopped working but stayed living away from home, requiring increasing levels of support from her flatmate and parents. They regularly checked on Gemma, helping with tasks including ensuring the shower and cooker were turned off and her clothes were on correctly, and she often phoned her mum up to 20 times a day for support. Susie said: "This all had to be subtle as I wanted her to have independence for as long as it was safe." Gemma moved home when she could no longer complete everyday tasks which required motor and cognitive skills, including changing bed sheets, getting dressed, and arriving to appointments on time. In April 2021 Gemma had a brain scan, which Ben said "unfortunately confirmed that there was something quite substantially wrong with her brain", which doctors first thought was a tumour. Gemma was referred to University College London (UCL) hospital for further brain scans, cognitive, and spinal fluid tests. Aged 28, Gemma was diagnosed with PCA in November 2021. Jess said the family were "devastated" by the diagnosis, but Gemma was "ecstatic" because she thought "they know what's wrong with me, we can fix it". Gemma "didn't know what it really meant, but that was obviously a blessing in disguise", said Jess. Following her diagnosis in 2021, Gemma's condition gradually worsened and her illness came to affect every aspect of her life. She gradually lost her ability to function independently, including feeding herself, swallowing, speaking and walking as her illness worsened. Gemma never stayed in hospital and was cared for at home by her family. Ben said: "Up until the very end, there were parts of her that sort of remained ... you could have a lot of difficult hours, but you could still get a laugh out of her. "She had a bit of a wicked sense of humour which definitely didn't go away." Gemma died surrounded by her family at home on November 27 last year. The team signed up for the London Marathon while Gemma was still alive, and completed other charity fundraisers including a sponsored walk in June 2023, raising £28,000 for the National Brain Appeal. By running the marathon, Ben said: "We're trying to raise as much money for RDS so that they can try and prevent stuff like this happening again. They can put their arms around families like ours. They couldn't cure Gemma, but they helped us navigate it the best way we could." Ben described the experience of running with his sister and seeing friends and family around the course as "emotional". Jess said the end goal was "do it for Gemma, make her proud". Although the team were put on different starting waves, they managed to meet and run the marathon together, raising more than £19,000 for RDS so far.
