Kelera's Village

$18,257 raised

From 178 Donations

TARGET $20,000

Please support this cause

AUD

Meet Kelera, a brave 6 year old girl living with BPAN (Beta-Propeller Protein Associated Neurodegeneration. BPAN is an extremely rare and devastating disorder that will gradually take away her abilities, leading to severe physical and cognitive challenges. Life expectancy for those with BPAN is heartbreakingly short, often just 20-30 years. Despite this diagnosis, Kelera is a ray of sunshine. If she's not skipping, she is smiling and her laughter is pure joy! Kelera's parents are on a mission to raise awareness and connect with other families who share similar challenges. The family are hoping to raise funds for a vital trip to a BPAN conference in the USA. The conference will bring together families and experts working to understand and find a cure for BPAN, and your support can make all the difference! More information on BPAN can be found at https://www.nbiadisorders.org/about-nbia/bpan.

Update

27 Mar 2025

Keleras Village – What a Success! Wow, what an incredible journey! Over 180 people joined us for the walk, supported by an amazing team of volunteers, generous sponsors, and countless donations. Our goal was simple but powerful: to get the Lagiloaloa family to the US this year for a vital BPAN conference—giving them the chance to learn more about the rare condition that Kelera bravely battles. We also wanted to raise awareness for BPAN and other rare disorders. Well, we absolutely smashed our expectations! Thanks to your overwhelming support, we raised a final total of over $47,000, covering all expenses for the family’s trip to the US—plus a well-deserved visit to Disneyland! But the impact doesn’t stop there. The Lagiloaloa family will continue sharing their story and knowledge with local schools, ensuring that the conversation around rare disorders continues for years to come. And even bigger news—this is just the beginning. With additional funds, we are thrilled to announce the future launch of Keleras Village, a charity dedicated to supporting families facing rare conditions. This means more annual walks, more support, and more hope for those in need. So while KMs for Kelera was a massive success, this is only the start of something even greater. Watch this space—because together, we are making a difference. From the bottom of our hearts, thank you.

Update

04 Mar 2025

💜Wow! We’ve Hit Over $20,000!💜 What an incredible milestone! Thanks to the unwavering support of our amazing community, Kilometres for Kelera has now surpassed a cumulative total of $20,000. This achievement means that the whole family can now travel to the US this year to learn more about rare diseases—what an incredible step forward! But we’re not stopping here. Your generosity can make an even bigger impact! James and Kristy have committed to donating a book and a picnic mat to local schools each year, along with a powerful message from Kelera about inclusivity on Rare disease day…. This initiative will help educate young minds and spread awareness about rare conditions like BPAN. Let’s rally together and push towards our next goal of $25,000. Every contribution, big or small, helps support Kristy and James in their ongoing mission to make a real difference. Read Kelera’s important message on inclusivity here: ————————————————💜💜💜💜💜 Hi my name is Kelera. I have just started kindergarten here at Banora Point Primary School. My teacher is Mrs Stewart and my support teacher is Miss Kelly. So far I love coming to school. I get to see all my new friends and my 2 big brothers Amen and Ozzy. Last year Amen did a speech about me titled ‘My sister, Kelera’. In his speech he explains, that even though I look just like you and him, I can’t do many things like you and him…yet. In 2023 I was diagnosed with a rare genetic condition. This condition is a mutation in the gene WDR-45 resulting in a disorder called Beta-Propellor Protein Associated Neurodegeneration, short form, B-Pan. B-Pan affects my ability to walk, talk and understand. B-Pan will eventually take away my physical and cognitive abilities, and in my late teens early adulthood I will develop sudden onset progressive dystonia-Parkinsonism and dementia. This years theme for Rare Disease Day was ‘Not everything is black and white’ Here are some facts about rare diseases Rare diseases currently affect 5% of the worldwide population. 300 million people worldwide are living with a rare disease There are 6000+ identified rare diseases Before I was born there were only 12 known cases of B-Pan in Australia. To help bring more awareness to rare disorders, each year on 28th February I will be donating a mat and a book and sharing my story with a local school or day care. This is the second year I’ve had the privilege of doing this and I stand here proud to be able to donate this mat ‘celebration’ and book ‘Rainbow of Friends’ to my school, Banora Point Primary. The aboriginal artist, DE GREER YINDIMINCARLIE, describes their work simply… “Come sit with me and tell me a yarn, Let me celebrate your life with you, Celebrate all you have, all you’ve experienced, and let’s be grateful for all of it. So, come sit with me and tell me your yarn.” If you see me around school, please say Hi, it might just be the best part of your day

Update

15 Feb 2025

We’ve Hit Our Next Milestone! ❤️🎉 Thanks to your incredible generosity, we’ve reached a cumulative total of $14,500—covering all expenses, flights, and accommodation for James, Kristy, and Kelera to travel to the U.S.! This is a huge step, and we couldn’t have done it without each and every one of you. But now, we need to dig even deeper to get the whole family there. Amen and Ozzy are Kelera’s biggest supporters, and it’s absolutely essential that they go too. Another $6,000 will make this happen, ensuring they can be right by her side where they belong. Let’s keep the momentum going! Share the link, spread the love, and let’s make this happen together. ❤️💪

Update

13 Feb 2025

Help Get Kelera’s Family to the US – We’re So Close! We’re almost at our first goal of $9,500 to cover airfares for James, Kristy, and Kelera—but we still need your help! This trip is about more than just travel. It’s about hope, knowledge, and a stronger future for Kelera. By attending this conference, her family will: ✨ Connect with others facing the same journey ✨ Learn what resources are available for Kelera’s care ✨ Meet experts for one-on-one discussions ✨ Help research by allowing Kelera to have vital blood tests The outcome? Better long-term support for Kelera, her brothers, and others navigating BPAN. This trip will build lasting relationships with medical professionals and families, ensuring the best possible care and advocacy for the future. Every donation brings them one step closer. If you can, please donate and share!

Update

09 Feb 2025

We would like to take a moment to send a huge thank you to those of you who have already donated to this amazing cause. We'd also like to share with you a few words from Kelera's parents to give you a an insight into the day to day life of having a child with BPAN. A Day in the Life of Kelera: A Heartbreaking Reality_ Our day begins with a sense of uncertainty, a feeling of trepidation. Will Kelera be okay today? Will she suffer from seizures, convulsions, or something new? As a non-verbal child, we can only try to guess what might happen, and that's a heavy burden to carry. Kelera's condition, BPAN (Beta-Propeller Protein-Associated Neurodegeneration), is a cruel and relentless foe. It's a rare genetic disorder that affects only a handful of children worldwide, and it's slowly taking away Kelera's abilities, her independence, and her future. The seizures will eventually subside, but they'll be replaced by the devastating symptoms of Parkinson's disease and dementia. It's a heartbreaking reality that we're forced to confront every day. As parents, we're not just caregivers; we're also emotional and physical supporters. We're the ones who wake up multiple times a night to check on Kelera, to make sure she's safe and comfortable. We're the ones who handle the toileting, eating, bathing, and dressing, often without any respite. But as Kelera grows older and her weight increases, everyday tasks become even more challenging. Bath time, once a relaxing ritual, has become a struggle. We strain to lift her in and out of the tub, worrying about her safety and our own physical limitations. Simple errands, like going to the shop, become daunting tasks. We struggle to maneuver Kelera in and out of the car seat, our hearts racing with every transfer. Even at home, we're always on high alert, watching Kelera's every move as she navigates the house. We worry about her putting something in her mouth, or worse, having an episode where she falls and hits her head. The fear of what might happen is always lurking, making it hard to relax, even for a moment. But there's another fear that we face, one that's harder to acknowledge: the fear of judgment. We worry about how others will perceive us, about how they'll react when we share our struggles. Will they think we're complaining? Will they think we're not doing enough? The fear of being judged, of being misunderstood, is a heavy burden to carry. And yet, despite this fear, we feel compelled to share our story. We want to raise awareness about BPAN, and the devastating impact it has on families like ours. We want to advocate for more research, more support, and more understanding. We want to show the world that our struggles are real, that our fears are valid, and that our love for Kelera is unwavering. So, we'll keep sharing our story, despite the fear of judgment. We'll keep advocating for Kelera, and for all the children like her who are fighting against BPAN. We'll keep holding on to hope, hope that one day, there will be a cure for BPAN, hope that one day, children like Kelera will be able to live a life free from pain, free from suffering, and free from fear. Until that day, we'll keep fighting, keep loving, and keep caring for our precious Kelera. Thank you again for very generous donation.

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DONATIONS178

Twin Towns Social Runners & Walkers Club Twin Towns Social Runners & Walkers Club

Tue, 15 Apr 2025

$ 500

Anahera Delamere-Mill

Tue, 1 Apr 2025

$ 50

Rowan King

Fri, 21 Mar 2025

$ 25

John & Susan Forrester

Thu, 20 Mar 2025

$ 100

Amy Humphreys

Tue, 18 Mar 2025

$ 50

Sorry we couldn’t get up to Tweed to do the Walk. Lots of love to you guys xx

$ 50

Joey April Phoebe

Mon, 17 Mar 2025

$ 1000

Mykilah Smallwood

Mon, 17 Mar 2025

$ 50

Kylie Myers

Mon, 17 Mar 2025

$ 20

Jaymie

Sat, 15 Mar 2025

$ 100

🥰🥰🥰

$ 100

Akiko Bannerman

Sat, 15 Mar 2025

$ 100

Fundraising for

James and Kristy Lagiloaloa

Funds banked to:

Kelera's Village

Campaign creator

Kirsty Love

BILAMBIL HEIGHTS, NSW

Created Jan 2025

health & medical

Enter your email to get updates

$18,257 raised

From 178 Donations

TARGET $20,000

Please support this cause

AUD

Fundraising for

James and Kristy Lagiloaloa

Funds banked to:

Kelera's Village

Campaign creator

Kirsty Love

BILAMBIL HEIGHTS, NSW

Created Jan 2025

health & medical