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Help Support 'Sophie' and Family through this difficult time

  • Sophie Update 23.12.2025

      23 December 2025
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    A small update on Sophie. It’s been a few turbulent weeks. Sophie has been unwell and was moved from the ward to PICU. She is currently requiring increased levels of oxygen and has been placed back on CPAP. Sadly, she has also contracted Rhinovirus, which has made this period even more challenging.

    On the 16th of December, Sophie underwent another operation to balloon two of her pulmonary veins.

    We’re taking things day by day and letting Sophie go at her own pace, even when it feels like we’re going backwards. It’s been a scary and exhausting time, but we’re holding onto the small positives — including a few smiles and giggles and some small improvement in her CO₂ levels at times.

    We also want to say a huge thank you for all the love, kindness, and support we’ve received throughout this year. The messages, prayers, donations, and encouragement have carried us through more than you’ll ever know .

    Love Reece and Octaviah

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  • Sophie Update 30.11.2025

      30 November 2025

    Hi Everyone,

    The last few weeks have brought some real progress for Sophie, and we wanted to share a quick update with everyone following her journey.

    She continues to meet milestones in her own time. Some of the highlights have been getting outside in the pram for fresh air and spending hours on low-flow support. These moments have meant so much.

    Unfortunately, Sophie experienced a setback yesterday and has had to return to PICU for closer care. It’s another tough turn in her journey, but she’s in the best hands and continues to show remarkable strength.

    On top of everything medically, her parents have also been facing a difficult battle to secure accommodation at the hospital along side Sophie — something that should be readily available for parents in situations like this, especially considering they normally reside in Dargaville. The ongoing uncertainty and strain around where they can stay has added yet another layer of stress during an already overwhelming time.

    Still, they remain right by Sophie’s side through every high and low, giving her all the love and support she needs.

    Thank you to everyone who has been sending kindness, messages, and support. It truly makes a difference. Sophie still has a long road ahead, but she’s fighting hard, and we continue to hope for brighter days ahead.

    xxx Sophie's Family.

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    • 01/12/2025 by Trudy

      Two steps forward and one back. But going in the right direction.

  • 19.10.2025 Day 194 Sophie Update.

      19 October 2025
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    It’s been a big few weeks for our little fighter. Over the past 20 days, Sophie has come out of Starship and is now back in NICU. She’s doing so well and has come off her CPAP system, now breathing with the help of what they call high-flow oxygen assist while also doing periods on low flow oxygen.

    Both of her recent surgeries were successful and achieved what was hoped for — such a huge relief and milestone for everyone. Sophie continues to show incredible strength and resilience, fighting like the little soldier she is every single day.

    Mum and Dad are doing well too. Their love, support, and unwavering presence by Sophie’s side never falters for a moment — they’re with her every step of the way through this unimaginable journey.

    They are so deeply grateful for the continued love, prayers, and support from everyone. This fight is far from over, but every message, donation, and bit of encouragement means the world to Sophie and her family. Thank you.

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  • 1.10.2025 Day 176 Sophie Update

      1 October 2025

    We just wanted to share a little update with you all. Sophie has been through so much this past week, having two surgeries in just a matter of days. She is now resting at Starship Hospital in the Intensive Care Unit, where she’s being cared for by the most incredible team.

    Sophie underwent pulmonary vein surgery on Monday and, under the circumstances, she is doing as well as we could hope. She continues to show us her strength and fight, and we are so proud of her.

    We are so grateful for the love, prayers, and support we’ve received—it really keeps us going during this journey. Thank you for standing beside Sophie and our family. 💗from Octaviah and Reece

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  • Day 170 Sophie’s surgery update

      25 September 2025
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    25.09.2025 We are so grateful for all the love and prayers for Sophie today. 💕 She went to the cath lab and the procedure went really well. Two of her pulmonary veins were ballooned, and she is now back in NICU resting.

    The next step in her journey will likely be another operation early next week to close her PDA, once she’s recovered enough. This road is incredibly tough, but Sophie continues to show amazing strength and fight.

    Thank you all so much for your continued support — it means the world to us. Thank you from Octaviah and Reece

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  • Day 164 - Sophie update - Surgical plan

      19 September 2025
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    It’s currently Friday night, 19 September, and the doctors are planning to take Sophie to radiology on Monday, 22 September, to intubate, sedate, and carry out her CT scan. This scan will determine whether she has a chance for treatment. If her pulmonary vein stenosis has narrowed the veins all the way through, surgery won’t be possible. Our hope is that they are only partially narrowed, so the team can balloon them in the cath lab on Tuesday.

    If everything goes as planned, Sophie will rest for a week while still intubated and sedated, and the following week she’ll go into surgery to close the PDA in her heart via an incision between her ribs in her back.

    We’re going to spend as much time as we can with her over the next few days in case things don’t go as we hope next week. Please continue to keep our strong little Sophie in your thoughts and prayers — we’re so grateful to have you all walking this journey alongside us.. from Octaviah and Reece

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    • 22/09/2025 by Jo

      Sending Love & Strength to Baby Sophie 💜🙏🏻To Reece & Octaviah Kia Kaha sending Strength & Positive Vibes to you both also 👊🏼💜

  • Day 158 - Sophie’s Journey

      13 September 2025
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    The last few weeks have been incredibly hard for Sophie. She’s needed more support, and watching her struggle has been heartbreaking. After seeking a second opinion from specialists in the US, we finally have a plan: Sophie will be intubated, sedated for a CT scan, then head to the cath lab, followed by surgery to close her PDA. She’ll also start a chemotherapy drug to slow the narrowing of her pulmonary veins. If all goes well, she may only need to stay intubated for 10–14 days.

    It’s a bittersweet place — we’re grateful for a chance we didn’t have before, but terrified of the risks. Her condition worsens each week, so we want to act quickly while also cherishing every moment with our strong little girl. There’s no cure for PVS; she’ll need ongoing procedures to keep her veins open as she grows. Our hope is that this surgery will give Sophie more precious time with us.

    To everyone who has loved and supported us: thank you, truly. Every ounce of energy is going into Sophie and getting through each day. We’re so thankful for your kindness as we face what’s ahead, and we ask you to keep holding Sophie in your thoughts as she fights, as bravely as ever, for her life.. from Octaviah & Reece

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  • 1.09.2025 - Update on Precious Baby Sophie

      1 September 2025
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    Thank you so much to everyone who has donated, shared, and sent love to Sophie and our family.

    Your kindness has helped us more than words can say during the most difficult time of our lives. Our beautiful Sophie, 145 days old, continues to fight so bravely, and we are cherishing every moment we get with her.

    Please keep Sophie in your thoughts, and if you're able, sharing this page means the world to us.

    Kind Regards Reece Neho and Octaviah Jackson

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