3 days ago
'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.'
