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Our precious daughter Nikau, 13, needs urgent medical treatment and time is of the essence!

  • Mission accomplished!

      19 August 2018
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    6 weeks post Op

    A picture is worth a thousand words (but do make sure you notice the waist! :-) )

    And most importantly, Nikau is doing so well! Still a little sore, but not more than before Op, and this time it is reducing as she is healing forward.

    I am forever grateful for all opportunities aligning, and all support arriving, for your love and faith. I am grateful for a lifetime that has prepared me for this moment of trust in the world and strength to challenge 'authority'. If we were to listen to the first 3 'experts' that came our way, Nikau's present and future would have been completely different. This is true in so many situations, endless daily decisions made mindlessly or with clarity.

    Please, share our story to inspire your people to trust that they deserve the best, that there is often a better solution. That experts can be wrong, uncertain or even scared, as they too are human.

    Xnoa

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  • Check this out!

      8 July 2018
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    Check this out

    This is the new starting point. Curves now in 20s. Lumbar spine would increase curve slightly over next 3 weeks with gravity.

    THEN

    Nikau will grow taller and curve will decrease.

    In the next couple of years will end up 10-15 degrees. Inshalla

    ❤

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    • 10/07/2018 by Rebekah Sullivan

      Thank you so much for posting these updates. It's awesome to see how she's getting along. Also, X-rays are super cool! Great to see that curve decrease.

      This is as much an intense experience for you as it is for Nikau. Watching your baby go through such things... I just want to acknowledge that. My love to you both.

  • Surgery done. Nikau is in ICU

      5 July 2018

    Hey A team, major step accomplished! It's hard to tell by how Nix is now, drugged up and sore little bird ❤ but Dr A feels it was successful. Expecting first immediate correction to be curves of T: 20 (down from 44) L:20 (down from 50). Then growth will create further self correction. This is time to breathe and give yourself a pat on the back and tell yourself and the person next to you, hey, I've done something great. I have helped this awesome kid person to secure a better life. THANK YOU! Arohanui ❤

    Nikau's whanau

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  • Checking into hospital tomorrow

      2 July 2018
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    One more sleep till check in

    Two more sleeps to surgery.

    We mention it through the day, briefly. Expressing specific concerns, like, They will cut me open, or general OMG it's tomorrow. And the million dollar question: what are you going to do when I wake up from surgery? I know now it is not:

    A. Look at you lovingly

    B. Hold your hand

    But

    C. Video you (For your Instagram). Yes. Sigh.

    Then we are back here, tourists, indulging on sugar syrup baklava and boating on the Phosphorous.

    Diversity?

    Huge thank you for your ongoing support!!!

    XNoa&Nikau

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  • Istanbul

      1 July 2018
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    We are here, it is hard to believe and a little surreal. Being tourists for 3 days in one of the world's most beautiful cities, while counting sleeps. Last night we have read together a journey blog of a girl the same age as Nikau who has been here few months ago (and is doing very well!)

    Nikau is now taking in more details to do with surgery; chest tubes, nausea, pain... it is scary for her, but mine is a strong warrior and i watch her quietly processing while choosing to focus on being here NOW, actually grateful of adventure with mum ❤❤❤ lucky me! So bring on 2 more days of siteseeing, heat and delicious food, we shall cross THAT bridge when we get there!

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  • Day 16

      26 June 2018
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    Amazing really, I did do some 'market research' before starting this campaign, and it was not looking promising, but I HAD TO DO IT because, well, I couldn't live with myself if I just didn't try to get the best possible outcome for my girl. And WOW!!! you all came on board! We have raised more than my theoretical goal, though I know one the cost is more about $90K than $75, which is surgery...but heck, no one would have guess we would make it here so fast. If we end up with more than WE need, we are committed to moving the love to the next family scrambling for a VBT for their child. We are all in it together!

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  • Day 11 (day 10 was a bit of a haze) Support is still going strong

      21 June 2018
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    So it is all happening, spoke to an Irish mother from Wales who could not rave enough about Dr Alanay and the team in Turkey. What a huge confident boost. She has asked what made me choose him and I had to admit that beyond the recommendations, it was the good feeling in my tummy. Gut feeling? Now searching flights, any way you tackle this journey it is going to be awfully long but I am concerned about the return. Should we break the trip in case it is too painful?

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  • We have got a date!

      19 June 2018
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    OMG

    Just heard last night that Nikau can have the surgery done in the first week of July - I am freaking temporary, working on harnessing all of this energy back into the heart, and moving forward. A friend is searching for flights and I am working on putting together the documents and money still needed to get it all ready for surgery and flights etc. (and sorting out other kids and dog while am away, work, etc. ;-)) I would have never dreamed to get so far so fast, THANK YOU!!!! Suddenly it is closer and the surgery feels very scary.. I have reached out to other families who have been treated successfully by Dr Alanay for positive affirmation :-)

    Love to you all,

    Noa & Nikau

    BTW the image is YESTERDAY'S, will take a current update later on today!!

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  • Day 7

      17 June 2018
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    Last night we have received a message from a couple, supporting Nikau so generously because of personal experience of a long fusion, wanting to save a young person from this outcome. THANK YOU Jill for sharing your story. There were moments I was doubting myself and you have reinforced that we are doing the right thing, the BEST WE CAN for our girl. I feel the weave of humanity holding my family and carrying us to safety. This I believe is a life forming experience for Nikau about the importance and unlimited power of kinship and community. (A picture is worth a thousand words..)

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  • Day 5 - we can see it all coming together!

      15 June 2018
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    I have been literally buzzing all week, highs and lows, courage and fear, clarity and doubt.

    Feeling all of YOUR energy invested in us and trying to rise up to meet it, all of it. Took me a while to be able to hold it. to BE so full of LOVE and ENERGY. No bullshit. This is the real stuff. <3

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  • Day 4 - mind blowing actually

      14 June 2018
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    Check it out, the blackboard says it all!!

    Beside Give a Little page we have set a bank account, Align with Nikau, and it is filling fast. In fact, I intend to book flights this weekend, as soon as I get the Okay from our surgeon, Prof Alanay.

    This is an incredibly challenging journey on many levels, the last two days I have been challenged with receiving SO MUCH. I had a moment of doubt and fear of not only choosing for my daughter, making massive decision on my own, but taking you all with us. Then I set and remembered WHY we are doing it, what is at stake and what is our GOAL. and I let myself be overwhelmed and fill up with emotion and be okay with that. Beside saving her back, you all are teaching Nikau the power of community and love. It takes a village, thank you Xnoa

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