'You can absolutely have it all': finding success in all areas with Jess Redfern
What do you love about Wellington and the Central West?
Love raising my family, with our parents and siblings just around the corner. I love the sense of community in Wellington and the powerhouse of women working to improve the "Wellington Narrative". We have a gorgeous park overlooking the river and so many new businesses opening their doors this year. Wellington is definitely worth a visit.
What inspired you to start Petal and Palm?
I love colour and decorating my home, I have never been one to save an outfit or "save the napkins" for a special occasion. I really believe in treating everyday as a party so I wanted to create a space for the community, especially the women in the community that focused on decorating each part of their lives. Petal and Palm is a "wonderland of decoration".
How do you juggle motherhood, pregnancy, writing and running your own business? What's your secret?
1. Do something today your future self will be grateful for; I chant this to myself all day. This may mean simply filling the jug and boiling it so next time Bobby needs a bottle it is ready but it can also mean bigger tasks like setting up direct debits into my superannuation.
2. If it's going to take the same amount of time to write something on your to-do list as it is to just do it - then just do it. We have enough to do and there is no prize for being "busy". Sometimes I catch myself "making a plan to make a plan", so now if it can be done straight away, I just do it because chances are my future self won't want to or won't have time to either. Discipline is my biggest asset.
3. Choose exactly what you want your best life to look like and say "NO" to everything that isn't it. I decide who I want to be and what that version of my life would look and feel like and I make decisions based on what that version of me would do
4. You can absolutely have it all (if you want) but that doesn't mean you have to DO it all. I really believe this; I live by my three Ps; passion, purpose and profits. If it doesn't make me happy, I'm not good at it and it's not making me money I find a way to remove it from my life or outsource.
What's something you're working on improving?
Not feeling like I have to DO it all. I'm trying and definitely making some progress. As a new mum (Bobby is 10 months and my second babe coming in early September) I have had to really be kind to myself and accept I can't control each day, routine and balance don't exist and learning to be okay with that.
What's the best advice you've ever received?
Building a successful business isn't about greed, it is about the relentless pursuit of personal freedom.
Central West Recommendations:
Best business: Petal + Palm
Best place to eat: Pellegrini's Italian Orange
Best event to attend: Wellington Boot Race Day 14th April 2024
Hidden Gem: Cameron Park, Wellington
Jess Redfern is the proud owner of National Disability Council, which offers NDIS-funded respite and in-home support across NSW. Jess is the founder of Petal and Palm a bricks and mortar store in Wellington and online shop for homewares, artwork, fashion and gifts.
What do you love about Wellington and the Central West?
Love raising my family, with our parents and siblings just around the corner. I love the sense of community in Wellington and the powerhouse of women working to improve the "Wellington Narrative". We have a gorgeous park overlooking the river and so many new businesses opening their doors this year. Wellington is definitely worth a visit.
What inspired you to start Petal and Palm?
I love colour and decorating my home, I have never been one to save an outfit or "save the napkins" for a special occasion. I really believe in treating everyday as a party so I wanted to create a space for the community, especially the women in the community that focused on decorating each part of their lives. Petal and Palm is a "wonderland of decoration".
How do you juggle motherhood, pregnancy, writing and running your own business? What's your secret?
1. Do something today your future self will be grateful for; I chant this to myself all day. This may mean simply filling the jug and boiling it so next time Bobby needs a bottle it is ready but it can also mean bigger tasks like setting up direct debits into my superannuation.
2. If it's going to take the same amount of time to write something on your to-do list as it is to just do it - then just do it. We have enough to do and there is no prize for being "busy". Sometimes I catch myself "making a plan to make a plan", so now if it can be done straight away, I just do it because chances are my future self won't want to or won't have time to either. Discipline is my biggest asset.
3. Choose exactly what you want your best life to look like and say "NO" to everything that isn't it. I decide who I want to be and what that version of my life would look and feel like and I make decisions based on what that version of me would do
4. You can absolutely have it all (if you want) but that doesn't mean you have to DO it all. I really believe this; I live by my three Ps; passion, purpose and profits. If it doesn't make me happy, I'm not good at it and it's not making me money I find a way to remove it from my life or outsource.
What's something you're working on improving?
Not feeling like I have to DO it all. I'm trying and definitely making some progress. As a new mum (Bobby is 10 months and my second babe coming in early September) I have had to really be kind to myself and accept I can't control each day, routine and balance don't exist and learning to be okay with that.
What's the best advice you've ever received?
Building a successful business isn't about greed, it is about the relentless pursuit of personal freedom.
Central West Recommendations:
Best business: Petal + Palm
Best place to eat: Pellegrini's Italian Orange
Best event to attend: Wellington Boot Race Day 14th April 2024
Hidden Gem: Cameron Park, Wellington
Jess Redfern is the proud owner of National Disability Council, which offers NDIS-funded respite and in-home support across NSW. Jess is the founder of Petal and Palm a bricks and mortar store in Wellington and online shop for homewares, artwork, fashion and gifts.
What do you love about Wellington and the Central West?
Love raising my family, with our parents and siblings just around the corner. I love the sense of community in Wellington and the powerhouse of women working to improve the "Wellington Narrative". We have a gorgeous park overlooking the river and so many new businesses opening their doors this year. Wellington is definitely worth a visit.
What inspired you to start Petal and Palm?
I love colour and decorating my home, I have never been one to save an outfit or "save the napkins" for a special occasion. I really believe in treating everyday as a party so I wanted to create a space for the community, especially the women in the community that focused on decorating each part of their lives. Petal and Palm is a "wonderland of decoration".
How do you juggle motherhood, pregnancy, writing and running your own business? What's your secret?
1. Do something today your future self will be grateful for; I chant this to myself all day. This may mean simply filling the jug and boiling it so next time Bobby needs a bottle it is ready but it can also mean bigger tasks like setting up direct debits into my superannuation.
2. If it's going to take the same amount of time to write something on your to-do list as it is to just do it - then just do it. We have enough to do and there is no prize for being "busy". Sometimes I catch myself "making a plan to make a plan", so now if it can be done straight away, I just do it because chances are my future self won't want to or won't have time to either. Discipline is my biggest asset.
3. Choose exactly what you want your best life to look like and say "NO" to everything that isn't it. I decide who I want to be and what that version of my life would look and feel like and I make decisions based on what that version of me would do
4. You can absolutely have it all (if you want) but that doesn't mean you have to DO it all. I really believe this; I live by my three Ps; passion, purpose and profits. If it doesn't make me happy, I'm not good at it and it's not making me money I find a way to remove it from my life or outsource.
What's something you're working on improving?
Not feeling like I have to DO it all. I'm trying and definitely making some progress. As a new mum (Bobby is 10 months and my second babe coming in early September) I have had to really be kind to myself and accept I can't control each day, routine and balance don't exist and learning to be okay with that.
What's the best advice you've ever received?
Building a successful business isn't about greed, it is about the relentless pursuit of personal freedom.
Central West Recommendations:
Best business: Petal + Palm
Best place to eat: Pellegrini's Italian Orange
Best event to attend: Wellington Boot Race Day 14th April 2024
Hidden Gem: Cameron Park, Wellington
Jess Redfern is the proud owner of National Disability Council, which offers NDIS-funded respite and in-home support across NSW. Jess is the founder of Petal and Palm a bricks and mortar store in Wellington and online shop for homewares, artwork, fashion and gifts.
What do you love about Wellington and the Central West?
Love raising my family, with our parents and siblings just around the corner. I love the sense of community in Wellington and the powerhouse of women working to improve the "Wellington Narrative". We have a gorgeous park overlooking the river and so many new businesses opening their doors this year. Wellington is definitely worth a visit.
What inspired you to start Petal and Palm?
I love colour and decorating my home, I have never been one to save an outfit or "save the napkins" for a special occasion. I really believe in treating everyday as a party so I wanted to create a space for the community, especially the women in the community that focused on decorating each part of their lives. Petal and Palm is a "wonderland of decoration".
How do you juggle motherhood, pregnancy, writing and running your own business? What's your secret?
1. Do something today your future self will be grateful for; I chant this to myself all day. This may mean simply filling the jug and boiling it so next time Bobby needs a bottle it is ready but it can also mean bigger tasks like setting up direct debits into my superannuation.
2. If it's going to take the same amount of time to write something on your to-do list as it is to just do it - then just do it. We have enough to do and there is no prize for being "busy". Sometimes I catch myself "making a plan to make a plan", so now if it can be done straight away, I just do it because chances are my future self won't want to or won't have time to either. Discipline is my biggest asset.
3. Choose exactly what you want your best life to look like and say "NO" to everything that isn't it. I decide who I want to be and what that version of my life would look and feel like and I make decisions based on what that version of me would do
4. You can absolutely have it all (if you want) but that doesn't mean you have to DO it all. I really believe this; I live by my three Ps; passion, purpose and profits. If it doesn't make me happy, I'm not good at it and it's not making me money I find a way to remove it from my life or outsource.
What's something you're working on improving?
Not feeling like I have to DO it all. I'm trying and definitely making some progress. As a new mum (Bobby is 10 months and my second babe coming in early September) I have had to really be kind to myself and accept I can't control each day, routine and balance don't exist and learning to be okay with that.
What's the best advice you've ever received?
Building a successful business isn't about greed, it is about the relentless pursuit of personal freedom.
Central West Recommendations:
Best business: Petal + Palm
Best place to eat: Pellegrini's Italian Orange
Best event to attend: Wellington Boot Race Day 14th April 2024
Hidden Gem: Cameron Park, Wellington
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
News.com.au
22-07-2025
- News.com.au
Massive penthouse sale as beachfront tower unveiled
An interstate buyer has splashed $9.1m on a luxury penthouse set to be unveiled within days as the scaffolding comes down on Palm Beach's newest tower. The bumper off-the-plan sale is the biggest deal inked for Graya's beachfront Kloud project, the company's first multiresidential offering on the Gold Coast. Tennis ace Ash Barty is among other buyers in the 23-unit development, with the Wimbledon champion dropping close to $4m on a half-floor apartment. Winner refused to live in 'too perfect' $4m prize home Graya director Rob Gray said just three units were still available within the 41.25m-high tower. 'These have just come to market as the scaffolding starts to come down to reveal the exterior design. 'Construction hit top-out just before the penthouse was launched to the market, leaving just the interior work to be completed,' Mr Gray said. The penthouse was marketed by White Fox agent Nic Whitehead and sold within 15 days, with three offers received. 'Most of our buyers have been Queensland locals, but the penthouse sold to an interstate buyer looking to holiday in beautiful Palm Beach,' Mr Gray said. The 507 sqm penthouse spans two full floors, comprising a luxury living level and rooftop entertaining terrace with spectacular ocean views and resort-style amenities 'We wanted to capture the exclusivity of living sky high without sacrificing the experience of being barefoot on the sand,' said fellow Graya director, Andrew Gray. 'The penthouse achieves this through seamless transition from inside to outside spaces and the feeling of freedom and sophisticated comfort.' The apartment has four bedrooms, a media room, and statement kitchen with an island dining bar with stunning fluted stone accents. The private rooftop hosts a decadent indoor steam room, and a barbecue kitchen overlooking the alfresco terrace with dining area, lounging space, fire pit, spa and a pool with wading ledge. Rob Gray said the residence set a new benchmark for high-end living on the beachfront, where boutique developers were scrambling to meet demand from cashed-up local and interstate apartment buyers. Kloud was expected to be completed in November.
The Advertiser
16-07-2025
- The Advertiser
'You can absolutely have it all': finding success in all areas with Jess Redfern
Jess Redfern is the proud owner of National Disability Council, which offers NDIS-funded respite and in-home support across NSW. Jess is the founder of Petal and Palm a bricks and mortar store in Wellington and online shop for homewares, artwork, fashion and gifts. What do you love about Wellington and the Central West? Love raising my family, with our parents and siblings just around the corner. I love the sense of community in Wellington and the powerhouse of women working to improve the "Wellington Narrative". We have a gorgeous park overlooking the river and so many new businesses opening their doors this year. Wellington is definitely worth a visit. What inspired you to start Petal and Palm? I love colour and decorating my home, I have never been one to save an outfit or "save the napkins" for a special occasion. I really believe in treating everyday as a party so I wanted to create a space for the community, especially the women in the community that focused on decorating each part of their lives. Petal and Palm is a "wonderland of decoration". How do you juggle motherhood, pregnancy, writing and running your own business? What's your secret? 1. Do something today your future self will be grateful for; I chant this to myself all day. This may mean simply filling the jug and boiling it so next time Bobby needs a bottle it is ready but it can also mean bigger tasks like setting up direct debits into my superannuation. 2. If it's going to take the same amount of time to write something on your to-do list as it is to just do it - then just do it. We have enough to do and there is no prize for being "busy". Sometimes I catch myself "making a plan to make a plan", so now if it can be done straight away, I just do it because chances are my future self won't want to or won't have time to either. Discipline is my biggest asset. 3. Choose exactly what you want your best life to look like and say "NO" to everything that isn't it. I decide who I want to be and what that version of my life would look and feel like and I make decisions based on what that version of me would do 4. You can absolutely have it all (if you want) but that doesn't mean you have to DO it all. I really believe this; I live by my three Ps; passion, purpose and profits. If it doesn't make me happy, I'm not good at it and it's not making me money I find a way to remove it from my life or outsource. What's something you're working on improving? Not feeling like I have to DO it all. I'm trying and definitely making some progress. As a new mum (Bobby is 10 months and my second babe coming in early September) I have had to really be kind to myself and accept I can't control each day, routine and balance don't exist and learning to be okay with that. What's the best advice you've ever received? Building a successful business isn't about greed, it is about the relentless pursuit of personal freedom. Central West Recommendations: Best business: Petal + Palm Best place to eat: Pellegrini's Italian Orange Best event to attend: Wellington Boot Race Day 14th April 2024 Hidden Gem: Cameron Park, Wellington Jess Redfern is the proud owner of National Disability Council, which offers NDIS-funded respite and in-home support across NSW. Jess is the founder of Petal and Palm a bricks and mortar store in Wellington and online shop for homewares, artwork, fashion and gifts. What do you love about Wellington and the Central West? Love raising my family, with our parents and siblings just around the corner. I love the sense of community in Wellington and the powerhouse of women working to improve the "Wellington Narrative". We have a gorgeous park overlooking the river and so many new businesses opening their doors this year. Wellington is definitely worth a visit. What inspired you to start Petal and Palm? I love colour and decorating my home, I have never been one to save an outfit or "save the napkins" for a special occasion. I really believe in treating everyday as a party so I wanted to create a space for the community, especially the women in the community that focused on decorating each part of their lives. Petal and Palm is a "wonderland of decoration". How do you juggle motherhood, pregnancy, writing and running your own business? What's your secret? 1. Do something today your future self will be grateful for; I chant this to myself all day. This may mean simply filling the jug and boiling it so next time Bobby needs a bottle it is ready but it can also mean bigger tasks like setting up direct debits into my superannuation. 2. If it's going to take the same amount of time to write something on your to-do list as it is to just do it - then just do it. We have enough to do and there is no prize for being "busy". Sometimes I catch myself "making a plan to make a plan", so now if it can be done straight away, I just do it because chances are my future self won't want to or won't have time to either. Discipline is my biggest asset. 3. Choose exactly what you want your best life to look like and say "NO" to everything that isn't it. I decide who I want to be and what that version of my life would look and feel like and I make decisions based on what that version of me would do 4. You can absolutely have it all (if you want) but that doesn't mean you have to DO it all. I really believe this; I live by my three Ps; passion, purpose and profits. If it doesn't make me happy, I'm not good at it and it's not making me money I find a way to remove it from my life or outsource. What's something you're working on improving? Not feeling like I have to DO it all. I'm trying and definitely making some progress. As a new mum (Bobby is 10 months and my second babe coming in early September) I have had to really be kind to myself and accept I can't control each day, routine and balance don't exist and learning to be okay with that. What's the best advice you've ever received? Building a successful business isn't about greed, it is about the relentless pursuit of personal freedom. Central West Recommendations: Best business: Petal + Palm Best place to eat: Pellegrini's Italian Orange Best event to attend: Wellington Boot Race Day 14th April 2024 Hidden Gem: Cameron Park, Wellington Jess Redfern is the proud owner of National Disability Council, which offers NDIS-funded respite and in-home support across NSW. Jess is the founder of Petal and Palm a bricks and mortar store in Wellington and online shop for homewares, artwork, fashion and gifts. What do you love about Wellington and the Central West? Love raising my family, with our parents and siblings just around the corner. I love the sense of community in Wellington and the powerhouse of women working to improve the "Wellington Narrative". We have a gorgeous park overlooking the river and so many new businesses opening their doors this year. Wellington is definitely worth a visit. What inspired you to start Petal and Palm? I love colour and decorating my home, I have never been one to save an outfit or "save the napkins" for a special occasion. I really believe in treating everyday as a party so I wanted to create a space for the community, especially the women in the community that focused on decorating each part of their lives. Petal and Palm is a "wonderland of decoration". How do you juggle motherhood, pregnancy, writing and running your own business? What's your secret? 1. Do something today your future self will be grateful for; I chant this to myself all day. This may mean simply filling the jug and boiling it so next time Bobby needs a bottle it is ready but it can also mean bigger tasks like setting up direct debits into my superannuation. 2. If it's going to take the same amount of time to write something on your to-do list as it is to just do it - then just do it. We have enough to do and there is no prize for being "busy". Sometimes I catch myself "making a plan to make a plan", so now if it can be done straight away, I just do it because chances are my future self won't want to or won't have time to either. Discipline is my biggest asset. 3. Choose exactly what you want your best life to look like and say "NO" to everything that isn't it. I decide who I want to be and what that version of my life would look and feel like and I make decisions based on what that version of me would do 4. You can absolutely have it all (if you want) but that doesn't mean you have to DO it all. I really believe this; I live by my three Ps; passion, purpose and profits. If it doesn't make me happy, I'm not good at it and it's not making me money I find a way to remove it from my life or outsource. What's something you're working on improving? Not feeling like I have to DO it all. I'm trying and definitely making some progress. As a new mum (Bobby is 10 months and my second babe coming in early September) I have had to really be kind to myself and accept I can't control each day, routine and balance don't exist and learning to be okay with that. What's the best advice you've ever received? Building a successful business isn't about greed, it is about the relentless pursuit of personal freedom. Central West Recommendations: Best business: Petal + Palm Best place to eat: Pellegrini's Italian Orange Best event to attend: Wellington Boot Race Day 14th April 2024 Hidden Gem: Cameron Park, Wellington Jess Redfern is the proud owner of National Disability Council, which offers NDIS-funded respite and in-home support across NSW. Jess is the founder of Petal and Palm a bricks and mortar store in Wellington and online shop for homewares, artwork, fashion and gifts. What do you love about Wellington and the Central West? Love raising my family, with our parents and siblings just around the corner. I love the sense of community in Wellington and the powerhouse of women working to improve the "Wellington Narrative". We have a gorgeous park overlooking the river and so many new businesses opening their doors this year. Wellington is definitely worth a visit. What inspired you to start Petal and Palm? I love colour and decorating my home, I have never been one to save an outfit or "save the napkins" for a special occasion. I really believe in treating everyday as a party so I wanted to create a space for the community, especially the women in the community that focused on decorating each part of their lives. Petal and Palm is a "wonderland of decoration". How do you juggle motherhood, pregnancy, writing and running your own business? What's your secret? 1. Do something today your future self will be grateful for; I chant this to myself all day. This may mean simply filling the jug and boiling it so next time Bobby needs a bottle it is ready but it can also mean bigger tasks like setting up direct debits into my superannuation. 2. If it's going to take the same amount of time to write something on your to-do list as it is to just do it - then just do it. We have enough to do and there is no prize for being "busy". Sometimes I catch myself "making a plan to make a plan", so now if it can be done straight away, I just do it because chances are my future self won't want to or won't have time to either. Discipline is my biggest asset. 3. Choose exactly what you want your best life to look like and say "NO" to everything that isn't it. I decide who I want to be and what that version of my life would look and feel like and I make decisions based on what that version of me would do 4. You can absolutely have it all (if you want) but that doesn't mean you have to DO it all. I really believe this; I live by my three Ps; passion, purpose and profits. If it doesn't make me happy, I'm not good at it and it's not making me money I find a way to remove it from my life or outsource. What's something you're working on improving? Not feeling like I have to DO it all. I'm trying and definitely making some progress. As a new mum (Bobby is 10 months and my second babe coming in early September) I have had to really be kind to myself and accept I can't control each day, routine and balance don't exist and learning to be okay with that. What's the best advice you've ever received? Building a successful business isn't about greed, it is about the relentless pursuit of personal freedom. Central West Recommendations: Best business: Petal + Palm Best place to eat: Pellegrini's Italian Orange Best event to attend: Wellington Boot Race Day 14th April 2024 Hidden Gem: Cameron Park, Wellington
The Advertiser
04-06-2025
- The Advertiser
'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.'
