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Millie's Miracle

  • Pre-surgery

      22 October 2021
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    We have received the news that surgery is postponed. Millie needs to gain more weight and get stronger. We are disappointed and frustrated. It has been difficult for Millie to re gain trust with the doctors, given that she was initially told that surgery would be October 19. She is going to try a feeding tube for 4-6 weeks. There is no guarantee it will be tolerated though. If not, she will need a central PICC line which is riskier and has more associated complications.

    So we are having to move to an apartment today. It’s a very unsettling time for us. We have struggled with language barriers, lack of communication and cultural differences.

    But Millie is nothing short of phenomenal. The pain she is enduring from median arcuate ligament syndrome compression is likened to that of stage 4 pancreatic cancer. And because of her Ehlers-Danlos syndrome she has been unable to find any pain medications that help.

    She continues to be strong, brave and courageous. She is truly inspiring.

    Thank you so much everyone for your kindness and generosity. We thank you from the bottom of our hearts ♥️

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  • Travelling to Germany

      15 October 2021
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    After a harrowing, exhausting 40 hour journey to Leipzig we received the unfortunate news that Prof Scholbach was in hospital and so could not perform the special colour Doppler ultrasound scans.

    So we left Leipzig and arrived in Düsseldorf at the Clinic Bel Etage October 11. It was overwhelming at first due to exhaustion, sleep deprivation and culture shock

    Millie is the lowest body weight patient they’ve had and so Prof Sandmann has her on IV nutrition before surgery.

    Millie is doing everything in her power to prepare for surgery. She has had a CTA scan today which will help Prof to determine more about the types of vascular compressions that are present.

    We are taking it one day at a time and are slowly getting used to the German ways.

    Thank you to everyone for your generosity and kindness.

      3 comments  |  Login to leave a comment
    • 15/10/2021 by Carol

      Think of you often 💖💖

    • 15/10/2021 by Rena

      Thinking of you both and sending lots of love and positive vibes, take care xo

    • 15/10/2021 by Trish

      Sending love and good wishes, my thoughts are with you both xxxx

  • Planning ahead

      19 September 2021
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    We have booked flights for departure October 9th with surgery October 22nd and a return date of mid November. Unfortunately we have not managed to secure an emergency MIQ allocation. The journey ahead seems even more daunting now.

    But Millie is just the most courageous young woman ever. She has been fighting for her life for so long and she’s not about to give up now.

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  • Huge thankyous!!

      8 September 2021

    We just wanted to take a moment and say a big thank you to:

    Hugo Trust for donating $5000. What an incredible organisation

    Donna Farhi - yoga teacher and beautiful person inside and out, for sharing this with so many around the globe. Thank you for everything, for all the time and energy you have put in to helping Millie.

    The de Waal’s for their very generous donation of beautiful toys for auction- $3000 at least

    Bruce McKinnon- such a generous donation

    Mirren & Cam & family - inspiring young couple, for sharing and caring and supporting

    Charteris-Wright family Free Spirit Dunedin- wonderful, supportive and big hearted family

    Niall McCormack- founder of Eyecare for Africa- a true humanitarian and good guy

    Niamh & family- so generous and kind

    Christine Parker & family- for listening and supporting and caring

    Robyn& Lettie James- for always offering help and support and understanding

    All the other Generous and Anonymous donations- to all of you - thank you!

    Everybody who has given- thank you!

    We are so grateful!!


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  • Compression syndromes

      4 September 2021

    Professor Scholbach has reviewed her scans that were done in NZ over the past few years.

    Millie has double nutcracker, pelvic congestion, and May Thurner syndromes.

    Unfortunately the imaging techniques are inadequate to diagnose any other compressions such as MALS.

    If we manage to get her to Germany Prof Scholbach can perform a much more specialised ultrasound.

    It is going to be very difficult to access an emergency allocation for MIQ. We have National MP Michael Woodhouse doing his best to help us.

    Thank you to everyone for your kindness and generosity- we are truly grateful to you all xxx

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    • 05/09/2021 by Tracey

      Oh Janine, we have all our fingers crossed for you and Millie. So happy you have Michael on board, he's a very smart, kind man who will do his utmost to help you. Trace, Dev and family x

    • 05/09/2021 by Janine

      Thank you for your lovely message of support Trace & family xx

    • 15/10/2021 by Carol

      Think of You all often. Love the updates 💖💖