'She was a normal, healthy kid': Alara's 'heartbreaking' battle with rare disease
Kerri Taylor smiles when she talks of her granddaughter, Alara.
Alara Kelly, age five, loves blowing bubbles and watching Bluey and Peppa Pig, according to Kerri, as well as spending time with her mother and older sister.
"She's always happy, always smiling," Kerri said.
"It's impossible to get the smile off her face."
Alara, from Marulan in the NSW southern highlands, was diagnosed with Batten Disease in 2024 - an extremely rare neurodegenerative disorder with no known cure.
The fatal disease primarily affects the nervous system, resulting in progressive cognitive decline, seizures, and loss of physical function over time.
The expected lifespan for Alara's strain of the disease is between 10 and 16 years.
Alara's mother, Haylei Taylor, says watching the progression in her daughter has been heartbreaking.
"She was a normal, healthy kid before, developing like other kids," Haylei said.
"But as the disease has advanced, she's stopped and gone back the other way."
A year after the diagnosis, Alara is non-verbal, incontinent, and wheelchair-bound, and must consume food through a nasogastric tube to her stomach.
She is unable to play, read, write, or bear her own weight.
The speed of the disease's progression has been a shock to her family, but Alara is unaware of her condition due to the cognitive effects - her mind is now similar to that of an 18-month-old, according to her mother.
"That's the only good thing about it - she has no clue that it's happening," Haylei said.
"But when family comes and sees her, there's such a huge difference from one visit to the next."
Haylei says Alara's 12-year-old sister, Mackenzie, has found the process especially difficult.
Alongside her partner, Justin Sams, Haylei has done everything to ensure Alara is as comfortable as possible, with the support of Kerri and Alara's father Darcy Kelly.
Already they have secured a wheelchair and specialised car seat from the NDIS, but other essential equipment, like a shower commode, neck support, hoist, and wheeled walker, has all been loaned from the community, or need to be hired through the NDIS.
A fundraiser event, called Alara's Batten Ball, will be held at the Veolia Arena on Saturday, August 23 to help raise money for vital medical treatments and support, as well as spread awareness of the disease and Alara's story.
The ball will include a silent auction, raffle prizes, and live music from local musician Jamie Agius.
Haylei says the support of family, friends, colleagues, and the broader community has been overwhelming so far.
The fundraiser was initially intended to raise money for a bigger car to fit Alara's wheelchair, but the generous donation of a Kia Carnival from the MacDougall Foundation and Sleapy's Foundation has allowed the family to focus on securing other crucial equipment.
Haylei says the act of generosity came as an enormous shock.
"I honestly can't thank them enough," she said.
The Crescent School, where Alara is enrolled, has also been "amazing" in providing the necessary support, according to both Haylei and Kerri.
Haylei also pays tribute to her partner Justin, who has been by her side throughout the difficult journey.
"None of this would've been possible without him," she said.
Batten Disease is caused by a genetic mutation that allows cellular waste to build up in the brain. There are 13 known strains of the disorder, all with varying symptoms.
Alara's strain, called CLN6, is exceedingly rare - she is one of only two people who have been diagnosed in Australia, and only around 125 cases have been recorded worldwide.
In 2018, a revolutionary enzyme-replacement treatment for another more common strain - CLN2 - was approved in Australia, which slows the progression of the disease.
While no effective treatment for CLN6 has yet been found in Australia, Haylei and Kerri are hopeful that research for a cure continues.
But for now, the family is doing what they can to enjoy their time with Alara while giving her the support she needs.
The Taylors make regular trips from Marulan to Sydney for specialist care and to Goulburn Base Hospital whenever Alara accidentally pulls her nasogastric tube out - a common occurrence, according to her grandmother.
Kerri says the thought of losing her granddaughter is devastating.
"It's really hard to see her and know we might not have her around soon," she said
"But while she's here, we'll do what we can to make her comfortable."
Alara's Batten Ball fundraiser will begin at 5pm on Saturday, August 23 at Veolia Arena.
If you would like to donate to help support Alara and her family, please find the online GoFundMe page 'Alara's Batten Battle.'
Kerri Taylor smiles when she talks of her granddaughter, Alara.
Alara Kelly, age five, loves blowing bubbles and watching Bluey and Peppa Pig, according to Kerri, as well as spending time with her mother and older sister.
"She's always happy, always smiling," Kerri said.
"It's impossible to get the smile off her face."
Alara, from Marulan in the NSW southern highlands, was diagnosed with Batten Disease in 2024 - an extremely rare neurodegenerative disorder with no known cure.
The fatal disease primarily affects the nervous system, resulting in progressive cognitive decline, seizures, and loss of physical function over time.
The expected lifespan for Alara's strain of the disease is between 10 and 16 years.
Alara's mother, Haylei Taylor, says watching the progression in her daughter has been heartbreaking.
"She was a normal, healthy kid before, developing like other kids," Haylei said.
"But as the disease has advanced, she's stopped and gone back the other way."
A year after the diagnosis, Alara is non-verbal, incontinent, and wheelchair-bound, and must consume food through a nasogastric tube to her stomach.
She is unable to play, read, write, or bear her own weight.
The speed of the disease's progression has been a shock to her family, but Alara is unaware of her condition due to the cognitive effects - her mind is now similar to that of an 18-month-old, according to her mother.
"That's the only good thing about it - she has no clue that it's happening," Haylei said.
"But when family comes and sees her, there's such a huge difference from one visit to the next."
Haylei says Alara's 12-year-old sister, Mackenzie, has found the process especially difficult.
Alongside her partner, Justin Sams, Haylei has done everything to ensure Alara is as comfortable as possible, with the support of Kerri and Alara's father Darcy Kelly.
Already they have secured a wheelchair and specialised car seat from the NDIS, but other essential equipment, like a shower commode, neck support, hoist, and wheeled walker, has all been loaned from the community, or need to be hired through the NDIS.
A fundraiser event, called Alara's Batten Ball, will be held at the Veolia Arena on Saturday, August 23 to help raise money for vital medical treatments and support, as well as spread awareness of the disease and Alara's story.
The ball will include a silent auction, raffle prizes, and live music from local musician Jamie Agius.
Haylei says the support of family, friends, colleagues, and the broader community has been overwhelming so far.
The fundraiser was initially intended to raise money for a bigger car to fit Alara's wheelchair, but the generous donation of a Kia Carnival from the MacDougall Foundation and Sleapy's Foundation has allowed the family to focus on securing other crucial equipment.
Haylei says the act of generosity came as an enormous shock.
"I honestly can't thank them enough," she said.
The Crescent School, where Alara is enrolled, has also been "amazing" in providing the necessary support, according to both Haylei and Kerri.
Haylei also pays tribute to her partner Justin, who has been by her side throughout the difficult journey.
"None of this would've been possible without him," she said.
Batten Disease is caused by a genetic mutation that allows cellular waste to build up in the brain. There are 13 known strains of the disorder, all with varying symptoms.
Alara's strain, called CLN6, is exceedingly rare - she is one of only two people who have been diagnosed in Australia, and only around 125 cases have been recorded worldwide.
In 2018, a revolutionary enzyme-replacement treatment for another more common strain - CLN2 - was approved in Australia, which slows the progression of the disease.
While no effective treatment for CLN6 has yet been found in Australia, Haylei and Kerri are hopeful that research for a cure continues.
But for now, the family is doing what they can to enjoy their time with Alara while giving her the support she needs.
The Taylors make regular trips from Marulan to Sydney for specialist care and to Goulburn Base Hospital whenever Alara accidentally pulls her nasogastric tube out - a common occurrence, according to her grandmother.
Kerri says the thought of losing her granddaughter is devastating.
"It's really hard to see her and know we might not have her around soon," she said
"But while she's here, we'll do what we can to make her comfortable."
Alara's Batten Ball fundraiser will begin at 5pm on Saturday, August 23 at Veolia Arena.
If you would like to donate to help support Alara and her family, please find the online GoFundMe page 'Alara's Batten Battle.'
Kerri Taylor smiles when she talks of her granddaughter, Alara.
Alara Kelly, age five, loves blowing bubbles and watching Bluey and Peppa Pig, according to Kerri, as well as spending time with her mother and older sister.
"She's always happy, always smiling," Kerri said.
"It's impossible to get the smile off her face."
Alara, from Marulan in the NSW southern highlands, was diagnosed with Batten Disease in 2024 - an extremely rare neurodegenerative disorder with no known cure.
The fatal disease primarily affects the nervous system, resulting in progressive cognitive decline, seizures, and loss of physical function over time.
The expected lifespan for Alara's strain of the disease is between 10 and 16 years.
Alara's mother, Haylei Taylor, says watching the progression in her daughter has been heartbreaking.
"She was a normal, healthy kid before, developing like other kids," Haylei said.
"But as the disease has advanced, she's stopped and gone back the other way."
A year after the diagnosis, Alara is non-verbal, incontinent, and wheelchair-bound, and must consume food through a nasogastric tube to her stomach.
She is unable to play, read, write, or bear her own weight.
The speed of the disease's progression has been a shock to her family, but Alara is unaware of her condition due to the cognitive effects - her mind is now similar to that of an 18-month-old, according to her mother.
"That's the only good thing about it - she has no clue that it's happening," Haylei said.
"But when family comes and sees her, there's such a huge difference from one visit to the next."
Haylei says Alara's 12-year-old sister, Mackenzie, has found the process especially difficult.
Alongside her partner, Justin Sams, Haylei has done everything to ensure Alara is as comfortable as possible, with the support of Kerri and Alara's father Darcy Kelly.
Already they have secured a wheelchair and specialised car seat from the NDIS, but other essential equipment, like a shower commode, neck support, hoist, and wheeled walker, has all been loaned from the community, or need to be hired through the NDIS.
A fundraiser event, called Alara's Batten Ball, will be held at the Veolia Arena on Saturday, August 23 to help raise money for vital medical treatments and support, as well as spread awareness of the disease and Alara's story.
The ball will include a silent auction, raffle prizes, and live music from local musician Jamie Agius.
Haylei says the support of family, friends, colleagues, and the broader community has been overwhelming so far.
The fundraiser was initially intended to raise money for a bigger car to fit Alara's wheelchair, but the generous donation of a Kia Carnival from the MacDougall Foundation and Sleapy's Foundation has allowed the family to focus on securing other crucial equipment.
Haylei says the act of generosity came as an enormous shock.
"I honestly can't thank them enough," she said.
The Crescent School, where Alara is enrolled, has also been "amazing" in providing the necessary support, according to both Haylei and Kerri.
Haylei also pays tribute to her partner Justin, who has been by her side throughout the difficult journey.
"None of this would've been possible without him," she said.
Batten Disease is caused by a genetic mutation that allows cellular waste to build up in the brain. There are 13 known strains of the disorder, all with varying symptoms.
Alara's strain, called CLN6, is exceedingly rare - she is one of only two people who have been diagnosed in Australia, and only around 125 cases have been recorded worldwide.
In 2018, a revolutionary enzyme-replacement treatment for another more common strain - CLN2 - was approved in Australia, which slows the progression of the disease.
While no effective treatment for CLN6 has yet been found in Australia, Haylei and Kerri are hopeful that research for a cure continues.
But for now, the family is doing what they can to enjoy their time with Alara while giving her the support she needs.
The Taylors make regular trips from Marulan to Sydney for specialist care and to Goulburn Base Hospital whenever Alara accidentally pulls her nasogastric tube out - a common occurrence, according to her grandmother.
Kerri says the thought of losing her granddaughter is devastating.
"It's really hard to see her and know we might not have her around soon," she said
"But while she's here, we'll do what we can to make her comfortable."
Alara's Batten Ball fundraiser will begin at 5pm on Saturday, August 23 at Veolia Arena.
If you would like to donate to help support Alara and her family, please find the online GoFundMe page 'Alara's Batten Battle.'
Kerri Taylor smiles when she talks of her granddaughter, Alara.
Alara Kelly, age five, loves blowing bubbles and watching Bluey and Peppa Pig, according to Kerri, as well as spending time with her mother and older sister.
"She's always happy, always smiling," Kerri said.
"It's impossible to get the smile off her face."
Alara, from Marulan in the NSW southern highlands, was diagnosed with Batten Disease in 2024 - an extremely rare neurodegenerative disorder with no known cure.
The fatal disease primarily affects the nervous system, resulting in progressive cognitive decline, seizures, and loss of physical function over time.
The expected lifespan for Alara's strain of the disease is between 10 and 16 years.
Alara's mother, Haylei Taylor, says watching the progression in her daughter has been heartbreaking.
"She was a normal, healthy kid before, developing like other kids," Haylei said.
"But as the disease has advanced, she's stopped and gone back the other way."
A year after the diagnosis, Alara is non-verbal, incontinent, and wheelchair-bound, and must consume food through a nasogastric tube to her stomach.
She is unable to play, read, write, or bear her own weight.
The speed of the disease's progression has been a shock to her family, but Alara is unaware of her condition due to the cognitive effects - her mind is now similar to that of an 18-month-old, according to her mother.
"That's the only good thing about it - she has no clue that it's happening," Haylei said.
"But when family comes and sees her, there's such a huge difference from one visit to the next."
Haylei says Alara's 12-year-old sister, Mackenzie, has found the process especially difficult.
Alongside her partner, Justin Sams, Haylei has done everything to ensure Alara is as comfortable as possible, with the support of Kerri and Alara's father Darcy Kelly.
Already they have secured a wheelchair and specialised car seat from the NDIS, but other essential equipment, like a shower commode, neck support, hoist, and wheeled walker, has all been loaned from the community, or need to be hired through the NDIS.
A fundraiser event, called Alara's Batten Ball, will be held at the Veolia Arena on Saturday, August 23 to help raise money for vital medical treatments and support, as well as spread awareness of the disease and Alara's story.
The ball will include a silent auction, raffle prizes, and live music from local musician Jamie Agius.
Haylei says the support of family, friends, colleagues, and the broader community has been overwhelming so far.
The fundraiser was initially intended to raise money for a bigger car to fit Alara's wheelchair, but the generous donation of a Kia Carnival from the MacDougall Foundation and Sleapy's Foundation has allowed the family to focus on securing other crucial equipment.
Haylei says the act of generosity came as an enormous shock.
"I honestly can't thank them enough," she said.
The Crescent School, where Alara is enrolled, has also been "amazing" in providing the necessary support, according to both Haylei and Kerri.
Haylei also pays tribute to her partner Justin, who has been by her side throughout the difficult journey.
"None of this would've been possible without him," she said.
Batten Disease is caused by a genetic mutation that allows cellular waste to build up in the brain. There are 13 known strains of the disorder, all with varying symptoms.
Alara's strain, called CLN6, is exceedingly rare - she is one of only two people who have been diagnosed in Australia, and only around 125 cases have been recorded worldwide.
In 2018, a revolutionary enzyme-replacement treatment for another more common strain - CLN2 - was approved in Australia, which slows the progression of the disease.
While no effective treatment for CLN6 has yet been found in Australia, Haylei and Kerri are hopeful that research for a cure continues.
But for now, the family is doing what they can to enjoy their time with Alara while giving her the support she needs.
The Taylors make regular trips from Marulan to Sydney for specialist care and to Goulburn Base Hospital whenever Alara accidentally pulls her nasogastric tube out - a common occurrence, according to her grandmother.
Kerri says the thought of losing her granddaughter is devastating.
"It's really hard to see her and know we might not have her around soon," she said
"But while she's here, we'll do what we can to make her comfortable."
Alara's Batten Ball fundraiser will begin at 5pm on Saturday, August 23 at Veolia Arena.
If you would like to donate to help support Alara and her family, please find the online GoFundMe page 'Alara's Batten Battle.'
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'She was a normal, healthy kid': Alara's 'heartbreaking' battle with rare disease
Kerri Taylor smiles when she talks of her granddaughter, Alara. Alara Kelly, age five, loves blowing bubbles and watching Bluey and Peppa Pig, according to Kerri, as well as spending time with her mother and older sister. "She's always happy, always smiling," Kerri said. "It's impossible to get the smile off her face." Alara, from Marulan in the NSW southern highlands, was diagnosed with Batten Disease in 2024 - an extremely rare neurodegenerative disorder with no known cure. The fatal disease primarily affects the nervous system, resulting in progressive cognitive decline, seizures, and loss of physical function over time. The expected lifespan for Alara's strain of the disease is between 10 and 16 years. Alara's mother, Haylei Taylor, says watching the progression in her daughter has been heartbreaking. "She was a normal, healthy kid before, developing like other kids," Haylei said. "But as the disease has advanced, she's stopped and gone back the other way." A year after the diagnosis, Alara is non-verbal, incontinent, and wheelchair-bound, and must consume food through a nasogastric tube to her stomach. She is unable to play, read, write, or bear her own weight. The speed of the disease's progression has been a shock to her family, but Alara is unaware of her condition due to the cognitive effects - her mind is now similar to that of an 18-month-old, according to her mother. "That's the only good thing about it - she has no clue that it's happening," Haylei said. "But when family comes and sees her, there's such a huge difference from one visit to the next." Haylei says Alara's 12-year-old sister, Mackenzie, has found the process especially difficult. Alongside her partner, Justin Sams, Haylei has done everything to ensure Alara is as comfortable as possible, with the support of Kerri and Alara's father Darcy Kelly. Already they have secured a wheelchair and specialised car seat from the NDIS, but other essential equipment, like a shower commode, neck support, hoist, and wheeled walker, has all been loaned from the community, or need to be hired through the NDIS. A fundraiser event, called Alara's Batten Ball, will be held at the Veolia Arena on Saturday, August 23 to help raise money for vital medical treatments and support, as well as spread awareness of the disease and Alara's story. The ball will include a silent auction, raffle prizes, and live music from local musician Jamie Agius. Haylei says the support of family, friends, colleagues, and the broader community has been overwhelming so far. The fundraiser was initially intended to raise money for a bigger car to fit Alara's wheelchair, but the generous donation of a Kia Carnival from the MacDougall Foundation and Sleapy's Foundation has allowed the family to focus on securing other crucial equipment. Haylei says the act of generosity came as an enormous shock. "I honestly can't thank them enough," she said. The Crescent School, where Alara is enrolled, has also been "amazing" in providing the necessary support, according to both Haylei and Kerri. Haylei also pays tribute to her partner Justin, who has been by her side throughout the difficult journey. "None of this would've been possible without him," she said. Batten Disease is caused by a genetic mutation that allows cellular waste to build up in the brain. There are 13 known strains of the disorder, all with varying symptoms. Alara's strain, called CLN6, is exceedingly rare - she is one of only two people who have been diagnosed in Australia, and only around 125 cases have been recorded worldwide. In 2018, a revolutionary enzyme-replacement treatment for another more common strain - CLN2 - was approved in Australia, which slows the progression of the disease. While no effective treatment for CLN6 has yet been found in Australia, Haylei and Kerri are hopeful that research for a cure continues. But for now, the family is doing what they can to enjoy their time with Alara while giving her the support she needs. The Taylors make regular trips from Marulan to Sydney for specialist care and to Goulburn Base Hospital whenever Alara accidentally pulls her nasogastric tube out - a common occurrence, according to her grandmother. Kerri says the thought of losing her granddaughter is devastating. "It's really hard to see her and know we might not have her around soon," she said "But while she's here, we'll do what we can to make her comfortable." Alara's Batten Ball fundraiser will begin at 5pm on Saturday, August 23 at Veolia Arena. If you would like to donate to help support Alara and her family, please find the online GoFundMe page 'Alara's Batten Battle.' Kerri Taylor smiles when she talks of her granddaughter, Alara. Alara Kelly, age five, loves blowing bubbles and watching Bluey and Peppa Pig, according to Kerri, as well as spending time with her mother and older sister. "She's always happy, always smiling," Kerri said. "It's impossible to get the smile off her face." Alara, from Marulan in the NSW southern highlands, was diagnosed with Batten Disease in 2024 - an extremely rare neurodegenerative disorder with no known cure. The fatal disease primarily affects the nervous system, resulting in progressive cognitive decline, seizures, and loss of physical function over time. The expected lifespan for Alara's strain of the disease is between 10 and 16 years. Alara's mother, Haylei Taylor, says watching the progression in her daughter has been heartbreaking. "She was a normal, healthy kid before, developing like other kids," Haylei said. "But as the disease has advanced, she's stopped and gone back the other way." A year after the diagnosis, Alara is non-verbal, incontinent, and wheelchair-bound, and must consume food through a nasogastric tube to her stomach. She is unable to play, read, write, or bear her own weight. The speed of the disease's progression has been a shock to her family, but Alara is unaware of her condition due to the cognitive effects - her mind is now similar to that of an 18-month-old, according to her mother. "That's the only good thing about it - she has no clue that it's happening," Haylei said. "But when family comes and sees her, there's such a huge difference from one visit to the next." Haylei says Alara's 12-year-old sister, Mackenzie, has found the process especially difficult. Alongside her partner, Justin Sams, Haylei has done everything to ensure Alara is as comfortable as possible, with the support of Kerri and Alara's father Darcy Kelly. Already they have secured a wheelchair and specialised car seat from the NDIS, but other essential equipment, like a shower commode, neck support, hoist, and wheeled walker, has all been loaned from the community, or need to be hired through the NDIS. A fundraiser event, called Alara's Batten Ball, will be held at the Veolia Arena on Saturday, August 23 to help raise money for vital medical treatments and support, as well as spread awareness of the disease and Alara's story. The ball will include a silent auction, raffle prizes, and live music from local musician Jamie Agius. Haylei says the support of family, friends, colleagues, and the broader community has been overwhelming so far. The fundraiser was initially intended to raise money for a bigger car to fit Alara's wheelchair, but the generous donation of a Kia Carnival from the MacDougall Foundation and Sleapy's Foundation has allowed the family to focus on securing other crucial equipment. Haylei says the act of generosity came as an enormous shock. "I honestly can't thank them enough," she said. The Crescent School, where Alara is enrolled, has also been "amazing" in providing the necessary support, according to both Haylei and Kerri. Haylei also pays tribute to her partner Justin, who has been by her side throughout the difficult journey. "None of this would've been possible without him," she said. Batten Disease is caused by a genetic mutation that allows cellular waste to build up in the brain. There are 13 known strains of the disorder, all with varying symptoms. Alara's strain, called CLN6, is exceedingly rare - she is one of only two people who have been diagnosed in Australia, and only around 125 cases have been recorded worldwide. In 2018, a revolutionary enzyme-replacement treatment for another more common strain - CLN2 - was approved in Australia, which slows the progression of the disease. While no effective treatment for CLN6 has yet been found in Australia, Haylei and Kerri are hopeful that research for a cure continues. But for now, the family is doing what they can to enjoy their time with Alara while giving her the support she needs. The Taylors make regular trips from Marulan to Sydney for specialist care and to Goulburn Base Hospital whenever Alara accidentally pulls her nasogastric tube out - a common occurrence, according to her grandmother. Kerri says the thought of losing her granddaughter is devastating. "It's really hard to see her and know we might not have her around soon," she said "But while she's here, we'll do what we can to make her comfortable." Alara's Batten Ball fundraiser will begin at 5pm on Saturday, August 23 at Veolia Arena. If you would like to donate to help support Alara and her family, please find the online GoFundMe page 'Alara's Batten Battle.' Kerri Taylor smiles when she talks of her granddaughter, Alara. Alara Kelly, age five, loves blowing bubbles and watching Bluey and Peppa Pig, according to Kerri, as well as spending time with her mother and older sister. "She's always happy, always smiling," Kerri said. "It's impossible to get the smile off her face." Alara, from Marulan in the NSW southern highlands, was diagnosed with Batten Disease in 2024 - an extremely rare neurodegenerative disorder with no known cure. The fatal disease primarily affects the nervous system, resulting in progressive cognitive decline, seizures, and loss of physical function over time. The expected lifespan for Alara's strain of the disease is between 10 and 16 years. Alara's mother, Haylei Taylor, says watching the progression in her daughter has been heartbreaking. "She was a normal, healthy kid before, developing like other kids," Haylei said. "But as the disease has advanced, she's stopped and gone back the other way." A year after the diagnosis, Alara is non-verbal, incontinent, and wheelchair-bound, and must consume food through a nasogastric tube to her stomach. She is unable to play, read, write, or bear her own weight. The speed of the disease's progression has been a shock to her family, but Alara is unaware of her condition due to the cognitive effects - her mind is now similar to that of an 18-month-old, according to her mother. "That's the only good thing about it - she has no clue that it's happening," Haylei said. "But when family comes and sees her, there's such a huge difference from one visit to the next." Haylei says Alara's 12-year-old sister, Mackenzie, has found the process especially difficult. Alongside her partner, Justin Sams, Haylei has done everything to ensure Alara is as comfortable as possible, with the support of Kerri and Alara's father Darcy Kelly. Already they have secured a wheelchair and specialised car seat from the NDIS, but other essential equipment, like a shower commode, neck support, hoist, and wheeled walker, has all been loaned from the community, or need to be hired through the NDIS. A fundraiser event, called Alara's Batten Ball, will be held at the Veolia Arena on Saturday, August 23 to help raise money for vital medical treatments and support, as well as spread awareness of the disease and Alara's story. The ball will include a silent auction, raffle prizes, and live music from local musician Jamie Agius. Haylei says the support of family, friends, colleagues, and the broader community has been overwhelming so far. The fundraiser was initially intended to raise money for a bigger car to fit Alara's wheelchair, but the generous donation of a Kia Carnival from the MacDougall Foundation and Sleapy's Foundation has allowed the family to focus on securing other crucial equipment. Haylei says the act of generosity came as an enormous shock. "I honestly can't thank them enough," she said. The Crescent School, where Alara is enrolled, has also been "amazing" in providing the necessary support, according to both Haylei and Kerri. Haylei also pays tribute to her partner Justin, who has been by her side throughout the difficult journey. "None of this would've been possible without him," she said. Batten Disease is caused by a genetic mutation that allows cellular waste to build up in the brain. There are 13 known strains of the disorder, all with varying symptoms. Alara's strain, called CLN6, is exceedingly rare - she is one of only two people who have been diagnosed in Australia, and only around 125 cases have been recorded worldwide. In 2018, a revolutionary enzyme-replacement treatment for another more common strain - CLN2 - was approved in Australia, which slows the progression of the disease. While no effective treatment for CLN6 has yet been found in Australia, Haylei and Kerri are hopeful that research for a cure continues. But for now, the family is doing what they can to enjoy their time with Alara while giving her the support she needs. The Taylors make regular trips from Marulan to Sydney for specialist care and to Goulburn Base Hospital whenever Alara accidentally pulls her nasogastric tube out - a common occurrence, according to her grandmother. Kerri says the thought of losing her granddaughter is devastating. "It's really hard to see her and know we might not have her around soon," she said "But while she's here, we'll do what we can to make her comfortable." Alara's Batten Ball fundraiser will begin at 5pm on Saturday, August 23 at Veolia Arena. If you would like to donate to help support Alara and her family, please find the online GoFundMe page 'Alara's Batten Battle.' Kerri Taylor smiles when she talks of her granddaughter, Alara. Alara Kelly, age five, loves blowing bubbles and watching Bluey and Peppa Pig, according to Kerri, as well as spending time with her mother and older sister. "She's always happy, always smiling," Kerri said. "It's impossible to get the smile off her face." Alara, from Marulan in the NSW southern highlands, was diagnosed with Batten Disease in 2024 - an extremely rare neurodegenerative disorder with no known cure. The fatal disease primarily affects the nervous system, resulting in progressive cognitive decline, seizures, and loss of physical function over time. The expected lifespan for Alara's strain of the disease is between 10 and 16 years. Alara's mother, Haylei Taylor, says watching the progression in her daughter has been heartbreaking. "She was a normal, healthy kid before, developing like other kids," Haylei said. "But as the disease has advanced, she's stopped and gone back the other way." A year after the diagnosis, Alara is non-verbal, incontinent, and wheelchair-bound, and must consume food through a nasogastric tube to her stomach. She is unable to play, read, write, or bear her own weight. The speed of the disease's progression has been a shock to her family, but Alara is unaware of her condition due to the cognitive effects - her mind is now similar to that of an 18-month-old, according to her mother. "That's the only good thing about it - she has no clue that it's happening," Haylei said. "But when family comes and sees her, there's such a huge difference from one visit to the next." Haylei says Alara's 12-year-old sister, Mackenzie, has found the process especially difficult. Alongside her partner, Justin Sams, Haylei has done everything to ensure Alara is as comfortable as possible, with the support of Kerri and Alara's father Darcy Kelly. Already they have secured a wheelchair and specialised car seat from the NDIS, but other essential equipment, like a shower commode, neck support, hoist, and wheeled walker, has all been loaned from the community, or need to be hired through the NDIS. A fundraiser event, called Alara's Batten Ball, will be held at the Veolia Arena on Saturday, August 23 to help raise money for vital medical treatments and support, as well as spread awareness of the disease and Alara's story. The ball will include a silent auction, raffle prizes, and live music from local musician Jamie Agius. Haylei says the support of family, friends, colleagues, and the broader community has been overwhelming so far. The fundraiser was initially intended to raise money for a bigger car to fit Alara's wheelchair, but the generous donation of a Kia Carnival from the MacDougall Foundation and Sleapy's Foundation has allowed the family to focus on securing other crucial equipment. Haylei says the act of generosity came as an enormous shock. "I honestly can't thank them enough," she said. The Crescent School, where Alara is enrolled, has also been "amazing" in providing the necessary support, according to both Haylei and Kerri. Haylei also pays tribute to her partner Justin, who has been by her side throughout the difficult journey. "None of this would've been possible without him," she said. Batten Disease is caused by a genetic mutation that allows cellular waste to build up in the brain. There are 13 known strains of the disorder, all with varying symptoms. Alara's strain, called CLN6, is exceedingly rare - she is one of only two people who have been diagnosed in Australia, and only around 125 cases have been recorded worldwide. In 2018, a revolutionary enzyme-replacement treatment for another more common strain - CLN2 - was approved in Australia, which slows the progression of the disease. While no effective treatment for CLN6 has yet been found in Australia, Haylei and Kerri are hopeful that research for a cure continues. But for now, the family is doing what they can to enjoy their time with Alara while giving her the support she needs. The Taylors make regular trips from Marulan to Sydney for specialist care and to Goulburn Base Hospital whenever Alara accidentally pulls her nasogastric tube out - a common occurrence, according to her grandmother. Kerri says the thought of losing her granddaughter is devastating. "It's really hard to see her and know we might not have her around soon," she said "But while she's here, we'll do what we can to make her comfortable." Alara's Batten Ball fundraiser will begin at 5pm on Saturday, August 23 at Veolia Arena. If you would like to donate to help support Alara and her family, please find the online GoFundMe page 'Alara's Batten Battle.'
The Advertiser
3 days ago
- The Advertiser
Top minister rejects external death in custody probe
Growing calls for an independent investigation into the death in custody of a young Aboriginal man have been strongly rejected by a territory's chief minister. A lawyers' group has called for an independent probe to also investigate the Northern Territory government's failure to provide its duty of care to the man who was on the NDIS and under state care. Kumanjayi White, a mentally disabled 24-year-old, died shortly after being forcibly restrained by two plain-clothes police officers at a supermarket in Alice Springs on May 27. Police allege the young man, originally from the desert community of Yuendumu, was shoplifting and had assaulted a security guard who confronted him. Police are investigating but calls have been growing for an independent inquiry to ensure impartiality and avoid issues concerning officers investigating their own. NT Police have already ruled out an external inquiry and Chief Minister Lia Finocchiaro on Tuesday backed that up, saying people could have full confidence in police "to do their job". "This now needs to take its course and I urge everyone to respect the process," she told ABC Radio Darwin. Police investigations of deaths in custody were entirely appropriate and that was "consistent nationally", Ms Finocchiaro said. Advocacy groups including Amnesty International and Justice Not Jails, along with Kumanjayi White's grandfather, Warlpiri elder Ned Jampijinpa Hargraves, have been calling for an external inquiry. The Yuendumu community also lost 19-year-old Kumanjayi Walker in 2019 when he was fatally shot by then NT police officer Zachary Rolfe during a bungled arrest. Mr Rolfe was in 2022 found not guilty of all charges over the death. The Kumanjayi Walker coronial findings have been postponed until July 7 after Kumanjayi White's death in custody. Mr Hargraves has also called for CCTV and security guard body-worn camera footage to be released to Kumanjayi White's family, saying "we do not trust police". Federal Indigenous Australians Minister Malarndirri McCarthy said last week an independent death in custody probe might be warranted "in the interest of having some separation". Ms Finocchiaro said she had spoken to Senator McCarthy about her comments, which she described as "entirely unhelpful". "If she wants to support the people of Yuendumu and people concerned about this, then the best thing she can do is use her powerful voice to call for calm and confidence in the NT Police Force," she said. The Australian Lawyers Alliance on Tuesday added its voice to calls for an external investigation to include the failure of the NT government's duty of care to Kumanjayi White. National criminal justice spokesman Greg Barns SC said the investigation needed independent oversight. "Unfortunately, police cannot be trusted to investigate their own, particularly in a small jurisdiction, and neither can the NT government be trusted to investigate its duty of care failure," he said in a statement. NT Police have said their investigation would abide by strict protocols with full transparency and be independently reviewed by the coroner. "We ask the community to allow the investigation to take its course," Acting Commissioner Martin Dole said in a statement. "We are committed to a full and fair examination of the facts." 13YARN 13 92 76 Lifeline 13 11 14 beyondblue 1300 22 4636 Growing calls for an independent investigation into the death in custody of a young Aboriginal man have been strongly rejected by a territory's chief minister. A lawyers' group has called for an independent probe to also investigate the Northern Territory government's failure to provide its duty of care to the man who was on the NDIS and under state care. Kumanjayi White, a mentally disabled 24-year-old, died shortly after being forcibly restrained by two plain-clothes police officers at a supermarket in Alice Springs on May 27. Police allege the young man, originally from the desert community of Yuendumu, was shoplifting and had assaulted a security guard who confronted him. Police are investigating but calls have been growing for an independent inquiry to ensure impartiality and avoid issues concerning officers investigating their own. NT Police have already ruled out an external inquiry and Chief Minister Lia Finocchiaro on Tuesday backed that up, saying people could have full confidence in police "to do their job". "This now needs to take its course and I urge everyone to respect the process," she told ABC Radio Darwin. Police investigations of deaths in custody were entirely appropriate and that was "consistent nationally", Ms Finocchiaro said. Advocacy groups including Amnesty International and Justice Not Jails, along with Kumanjayi White's grandfather, Warlpiri elder Ned Jampijinpa Hargraves, have been calling for an external inquiry. The Yuendumu community also lost 19-year-old Kumanjayi Walker in 2019 when he was fatally shot by then NT police officer Zachary Rolfe during a bungled arrest. Mr Rolfe was in 2022 found not guilty of all charges over the death. The Kumanjayi Walker coronial findings have been postponed until July 7 after Kumanjayi White's death in custody. Mr Hargraves has also called for CCTV and security guard body-worn camera footage to be released to Kumanjayi White's family, saying "we do not trust police". Federal Indigenous Australians Minister Malarndirri McCarthy said last week an independent death in custody probe might be warranted "in the interest of having some separation". Ms Finocchiaro said she had spoken to Senator McCarthy about her comments, which she described as "entirely unhelpful". "If she wants to support the people of Yuendumu and people concerned about this, then the best thing she can do is use her powerful voice to call for calm and confidence in the NT Police Force," she said. The Australian Lawyers Alliance on Tuesday added its voice to calls for an external investigation to include the failure of the NT government's duty of care to Kumanjayi White. National criminal justice spokesman Greg Barns SC said the investigation needed independent oversight. "Unfortunately, police cannot be trusted to investigate their own, particularly in a small jurisdiction, and neither can the NT government be trusted to investigate its duty of care failure," he said in a statement. NT Police have said their investigation would abide by strict protocols with full transparency and be independently reviewed by the coroner. "We ask the community to allow the investigation to take its course," Acting Commissioner Martin Dole said in a statement. "We are committed to a full and fair examination of the facts." 13YARN 13 92 76 Lifeline 13 11 14 beyondblue 1300 22 4636 Growing calls for an independent investigation into the death in custody of a young Aboriginal man have been strongly rejected by a territory's chief minister. A lawyers' group has called for an independent probe to also investigate the Northern Territory government's failure to provide its duty of care to the man who was on the NDIS and under state care. Kumanjayi White, a mentally disabled 24-year-old, died shortly after being forcibly restrained by two plain-clothes police officers at a supermarket in Alice Springs on May 27. Police allege the young man, originally from the desert community of Yuendumu, was shoplifting and had assaulted a security guard who confronted him. Police are investigating but calls have been growing for an independent inquiry to ensure impartiality and avoid issues concerning officers investigating their own. NT Police have already ruled out an external inquiry and Chief Minister Lia Finocchiaro on Tuesday backed that up, saying people could have full confidence in police "to do their job". "This now needs to take its course and I urge everyone to respect the process," she told ABC Radio Darwin. Police investigations of deaths in custody were entirely appropriate and that was "consistent nationally", Ms Finocchiaro said. Advocacy groups including Amnesty International and Justice Not Jails, along with Kumanjayi White's grandfather, Warlpiri elder Ned Jampijinpa Hargraves, have been calling for an external inquiry. The Yuendumu community also lost 19-year-old Kumanjayi Walker in 2019 when he was fatally shot by then NT police officer Zachary Rolfe during a bungled arrest. Mr Rolfe was in 2022 found not guilty of all charges over the death. The Kumanjayi Walker coronial findings have been postponed until July 7 after Kumanjayi White's death in custody. Mr Hargraves has also called for CCTV and security guard body-worn camera footage to be released to Kumanjayi White's family, saying "we do not trust police". Federal Indigenous Australians Minister Malarndirri McCarthy said last week an independent death in custody probe might be warranted "in the interest of having some separation". Ms Finocchiaro said she had spoken to Senator McCarthy about her comments, which she described as "entirely unhelpful". "If she wants to support the people of Yuendumu and people concerned about this, then the best thing she can do is use her powerful voice to call for calm and confidence in the NT Police Force," she said. The Australian Lawyers Alliance on Tuesday added its voice to calls for an external investigation to include the failure of the NT government's duty of care to Kumanjayi White. National criminal justice spokesman Greg Barns SC said the investigation needed independent oversight. "Unfortunately, police cannot be trusted to investigate their own, particularly in a small jurisdiction, and neither can the NT government be trusted to investigate its duty of care failure," he said in a statement. NT Police have said their investigation would abide by strict protocols with full transparency and be independently reviewed by the coroner. "We ask the community to allow the investigation to take its course," Acting Commissioner Martin Dole said in a statement. "We are committed to a full and fair examination of the facts." 13YARN 13 92 76 Lifeline 13 11 14 beyondblue 1300 22 4636 Growing calls for an independent investigation into the death in custody of a young Aboriginal man have been strongly rejected by a territory's chief minister. A lawyers' group has called for an independent probe to also investigate the Northern Territory government's failure to provide its duty of care to the man who was on the NDIS and under state care. Kumanjayi White, a mentally disabled 24-year-old, died shortly after being forcibly restrained by two plain-clothes police officers at a supermarket in Alice Springs on May 27. Police allege the young man, originally from the desert community of Yuendumu, was shoplifting and had assaulted a security guard who confronted him. Police are investigating but calls have been growing for an independent inquiry to ensure impartiality and avoid issues concerning officers investigating their own. NT Police have already ruled out an external inquiry and Chief Minister Lia Finocchiaro on Tuesday backed that up, saying people could have full confidence in police "to do their job". "This now needs to take its course and I urge everyone to respect the process," she told ABC Radio Darwin. Police investigations of deaths in custody were entirely appropriate and that was "consistent nationally", Ms Finocchiaro said. Advocacy groups including Amnesty International and Justice Not Jails, along with Kumanjayi White's grandfather, Warlpiri elder Ned Jampijinpa Hargraves, have been calling for an external inquiry. The Yuendumu community also lost 19-year-old Kumanjayi Walker in 2019 when he was fatally shot by then NT police officer Zachary Rolfe during a bungled arrest. Mr Rolfe was in 2022 found not guilty of all charges over the death. The Kumanjayi Walker coronial findings have been postponed until July 7 after Kumanjayi White's death in custody. Mr Hargraves has also called for CCTV and security guard body-worn camera footage to be released to Kumanjayi White's family, saying "we do not trust police". Federal Indigenous Australians Minister Malarndirri McCarthy said last week an independent death in custody probe might be warranted "in the interest of having some separation". Ms Finocchiaro said she had spoken to Senator McCarthy about her comments, which she described as "entirely unhelpful". "If she wants to support the people of Yuendumu and people concerned about this, then the best thing she can do is use her powerful voice to call for calm and confidence in the NT Police Force," she said. The Australian Lawyers Alliance on Tuesday added its voice to calls for an external investigation to include the failure of the NT government's duty of care to Kumanjayi White. National criminal justice spokesman Greg Barns SC said the investigation needed independent oversight. "Unfortunately, police cannot be trusted to investigate their own, particularly in a small jurisdiction, and neither can the NT government be trusted to investigate its duty of care failure," he said in a statement. NT Police have said their investigation would abide by strict protocols with full transparency and be independently reviewed by the coroner. "We ask the community to allow the investigation to take its course," Acting Commissioner Martin Dole said in a statement. "We are committed to a full and fair examination of the facts." 13YARN 13 92 76 Lifeline 13 11 14 beyondblue 1300 22 4636
ABC News
30-05-2025
- ABC News
Child rapist Stephen White to be released from prison despite recent parole breach
A man who raped and tried to kill a five-year-old girl in Western Australia's far north in 2001, and recently attacked a support worker while on parole following his 22-year jail term, is set to be released into the community again. Stephen Neil White sent shock waves through the Kimberley community in 2001 after abducting and attacking a young girl while on a camping trip. On June 18, 2001, White befriended the girl's guardian and dragged the child away from a campsite in Kununurra before raping her. He also inflicted a life-threatening injury to the child by striking her over the head with a rock before taking her to the hospital. White spent almost 22 years in prison for the attack and was released in December 2023 on a three-year supervision order. Then in June 2024 he attacked a disability support worker with a knife and was subsequently arrested and sent back to prison. His offending in WA followed an eight-year prison sentence in South Australia after he raped a 73-year-old woman while in his twenties. On Monday a Supreme Court justice decided to release White from prison under strict supervision, with the 59-year-old agreeing to abide by 67 conditions. Justice Fiona Seaward determined the risk of reoffending could be managed by stringent management of White's life which will involve 24-hour NDIS supervision, seven days a week. The court heard White had an NDIS plan valued at more than $800,000 per year to support his intellectual disabilities. As part of his release White must regularly report to police, abide by a curfew, not consume alcohol and not engage with children. He must reside at a specific address, not leave Western Australia, comply with rehabilitation programs and not attend public events where children may be present. Justice Seaward's decision to release White was informed by a psychiatric report which detailed his history of schizophrenia, an intellectual disability, and an acquired brain injury. The report found White had made progress over recent years while incarcerated but remained "at a high risk of serious sexual reoffending" if not subjected to supervision conditions. "Mr White's primary risk for sexual offending would be both predatory and opportunistic towards predominantly vulnerable females of various ages," the report reads. "Warning signs of reoffending would include his relapse into alcohol and cannabis use and disengagement from his therapists and supervising agencies." However, the report found White's risk of reoffending could be managed if he was released on a strict supervision order. In opting to release White, Justice Seaward said she had "formed the view the supervision order will ensure adequate protection of the community." "In reaching this conclusion I am also satisfied on the balance of probabilities that Mr White will substantially comply with the standard conditions of the supervision order," she said. White will be under a supervision order until December 2026.
