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Amelia’s Journey, Support during rare- high risk brain surgery

  • Sugery date confirmed

      14 May 2026
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    SURGERY DATE CONFIRMED 🧠

    Amelia’s Craniotomy is scheduled for June 9th 2026.

    We are now only 26 days away, and this has all come around so quickly. After months of waiting, it suddenly feels very real for our family, emotional, scary, and a lot to process as we prepare for this huge moment.

    We want to say a huge thank you for all the love and support so far. It has carried us through more than you know ❤️

    While some costs are covered, we’re trying to raise some funds to help ease the pressure while we are away with Amelia for surgery and recovery.

    If you are able to donate or share Amelia’s Givealittle page, it truly means the world to us ❤️

    Please keep our brave girl in your thoughts as we head into these next few weeks 🫶🏻

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  • With gratitude - Always

      8 May 2026
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    With gratitude

    As always, we are incredibly grateful for the support, kindness, prayers, positive thoughts, and care shown throughout Amelia’s journey so far.

    This next stage is serious, uncertain, and deeply significant for our family, and every contribution, no matter the size, genuinely helps lighten the load.

    Thank you for standing with us.

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  • Why this matters

      8 May 2026
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    Why this matters

    This is not a routine procedure. It is a rare, complex brain tumour in a child requiring high-risk neurosurgical intervention in a deep and sensitive part of the brain.

    We are now entering the most critical stage of Amelia’s treatment journey. While there is a treatment plan in place, there is also significant uncertainty, and the emotional and practical weight of this is very real for our family.

    Having a small financial buffer allows us to stay fully present for Amelia and reduces additional stress during this time.

    Our goal

    We are raising funds to help ease the financial pressure of travel, daily hospital costs, and the unexpected expenses that come with Amelia’s surgery and recovery.

    Any additional support will continue to help with ongoing appointments and recovery needs

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  • About Amelia’s family

      8 May 2026
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    About our family

    We are a busy family of seven from Taranaki, doing our best to navigate an incredibly complex season of life while keeping things as steady and normal as possible for our children.

    Alongside Amelia’s ongoing tumour journey, our family has already spent recent years navigating childhood cancer treatment with her younger brother Bodhi, meaning hospital life, appointments, travel, and uncertainty have become a significant part of our world.

    Despite this, we continue to hold tightly to the things that matter most to us, family, community, laughter, connection, and creating as much normality as we can for our kids through all of this.

    The support we’ve received from those around us has carried us more than people probably realise.

    Some of you may know bodhi from his online presence on his Facebook page Bodhi’s Journey

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  • What the donations will be used for

      8 May 2026
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    What we are needing support with

    Even with basic essential costs covered, there are still ongoing and unpredictable expenses during treatment including travel between Taranaki and Auckland (flights, fuel, parking), food and daily living costs during hospital stays, unexpected expenses during treatment or delays, reduced flexibility around work and travel during critical periods, maintaining stability for our other children at home, and sitters or care support costs.

    These are the real-world costs that come with hospital stays, extended admissions, and repeated travel.

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  • Sugery and risks

      8 May 2026
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    The seriousness of this surgery

    Amelia is now facing a very complex brain operation, a craniotomy targeting a deep midline tumour in the pineal region.

    This area of the brain sits close to critical neurological structures responsible for vision pathways, coordination and movement, memory and cognitive processing, and central brain signalling systems.

    Because of this location, the surgery is considered high-risk neurosurgery, requiring extreme precision. The surgical team must carefully balance tumour removal with protecting neurological function.

    Some risks discussed include stroke, seizures, memory and cognitive changes, vision or movement disturbances, and other neurological complications, followed by a significant recovery period.

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  • Pots diagnosis

      8 May 2026
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    Amela has also since been diagnosed with POTS, which has added further complexity to her symptoms and overall health picture.

    Recent scans have shown that the tumour has grown more than originally expected. After extensive multidisciplinary discussion, her neurosurgical team has now made the decision to proceed with surgical removal due to the risks of continued growth and neurological impact.

    Following this decision, surgery is now planned within the coming weeks, which has come as a shock to us and has quickly moved us into the next stage of treatment.

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  • Back ground story

      8 May 2026
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    Amelia is now preparing for a major brain operation (craniotomy) for a rare papillary tumour of the pineal region (PTPR) located deep within the brain.

    This is not a common brain tumour. It is an extremely rare diagnosis, and her surgeon has explained that based on the genetic profile of her tumour, she is among only a very small number of documented cases worldwide, approximately 30 reported cases with similar features.

    This rarity means there is limited long-term data, and treatment decisions require highly specialised neurosurgical judgement.

    How we got here

    Amelia was first diagnosed early last year at the age of 10 after a sudden onset of headaches and eye pain symptoms. Since then, she has been in a careful “watch and wait” approach under close specialist monitoring, with regular scans and ongoing neurology and neurosurgery input.

    Over this time, she has continued to experience significant symptoms including persistent headaches and head pain, cognitive and memory difficulties, learning and cognitive difficulties, fatigue and neurological changes, and functional impacts on daily life.

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