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Millie's Miracle

  • Gratitude

      15 November 2021

    Although the trip to Germany didn’t go as hoped, we remain philosophical about the whole experience. At least we tried and we now know more about the limitations of worldwide mainstream medicine for the treatment and understanding of EDS.

    Thank you to those who provided support/acts of kindness in Germany; Eike Breitbarth, Donna Farhi, Carolanne Weidle, Lisa Akesson, Adam Rankin, Charlotte Stubbs, Rosann Connolly-George, Brad Black, Sinead at Yogandha.

    Thank you to the wonderful support people back home; Mike & Claudine, Krissy & Graeme, Kim & Riv, Zuzana, Rosann (again)

    Millie is focused on holistic healing; meditation, yoga, Qi gong, Ayurveda, sound therapy, holistic nutrition. Thank you to the generous amazing practitioners who continue to help us out of the kindness of their hearts; Donna, Charlotte, Brad.

    We are so grateful to every single one of you who have helped us on this journey.

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  • Journey home

      8 November 2021

    Millie has been recuperating after the trauma of complications from the feeding tube. She had a fever for several days and the strong pain killers wore off very quickly. It was a frightening time.

    The head doctors of the clinic, Drs Schmitz and Al-Khayat, were extremely diplomatic and did what they could to try and resolve a very difficult situation.

    Hopefully new protocol will mean no one else will have to endure the disappointment we have had.

    We have flights for November 12 and arrive in NZ 11.45pm Nov 13. I have been appealing the declined MIQ exemption. But it seems unlikely.

    Thank you all so very very much for your continued support, generosity and kindness

      5 comments  |  Login to leave a comment

    • 09/11/2021 by Maya

      Hello Millie, You and your Mum are the bravest people I know. When you flew to Germany, you took 1,061 of us with you and we are still here ,sending you our love and support. Warm hugs. Maya

    • 09/11/2021 by Julie

      I 'ditto' Maya's comment

      I am not sure what we can do to help but can we contact authorities/MP's this side of MIQ for you? Much love to you both x

    • 10/11/2021 by Janine

      Wow. Thank you Maya for your lovely message of support and kindness. It is very heartbeat 💗

    • 15/11/2021 by Janine

      Thank you so much Julie. We are coping well in MIQ. 💕

    • 15/11/2021 by Janine

      Thank you so much Julie. We are coping well in MIQ. 💕

  • Devastating news

      1 November 2021

    Unfortunately things are not going well.

    Millie has got progressively worse since we got to Germany.

    A team meeting was held and it was decided that she is too weak for surgery. The surgeon’s poor judgment, lack of communication and transparency mean we no longer have any trust or faith in him.

    Millie has had IV nutrition but it did not help and caused a lot of trauma to her veins.

    She then had a PEG-J tube placed endoscopically but it is causing terrible complications; pain in her chest, pelvis and back. This is hindering her ability to drink and eat and she has deteriorated further.

    The stress is immense and made only worse due to language and cultural difficulties.

    Sadly Germany is not the answer for Millie.

      5 comments  |  Login to leave a comment

    • 02/11/2021 by Emma

      My heart breaks for you guys, it's so unfair that Millie has to suffer like this. There really are no words.. I am just so sorry.

    • 02/11/2021 by Cathy

      So sorry to hear how difficult this has been and not the outcome we were so hoping for you, sending lots of love to you all xx

    • 04/11/2021 by Tracey

      So sorry to read this Janine and Millie. Sending love from us here, and safe travels home when you can x

    • 10/11/2021 by Janine

      Thank you all for your kind messages. ♥️

    • 10/11/2021 by Janine

      Thank you all for your kind messages. ♥️

  • 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 ♥️

      5 comments  |  Login to leave a comment

    • 24/10/2021 by Nicole

      You guys. I’m very sorry to hear about your disappointment and frustration, which is fully understandable. I live nearby Düsseldorf and I work in Düsseldorf. If you need any help with translation or help to ease the cultural shock let me know. I’m happy to step in. I am German and it might be easier to have someone who understands both language and the system. Let me know if I can be of any help. I can imagine how hard it is to be in a foreign country under these circumstances and I would like to make it a little easier for you.

    • 24/10/2021 by Nicole

      You guys. I’m very sorry to hear about your disappointment and frustration, which is fully understandable. I live nearby Düsseldorf and I work in Düsseldorf. If you need any help with translation or help to ease the cultural shock let me know. I’m happy to step in. I am German and it might be easier to have someone who understands both language and the system. Let me know if I can be of any help. I can imagine how hard it is to be in a foreign country under these circumstances and I would like to make it a little easier for you.

    • 25/10/2021 by Sinead

      Can I send Millie some of my aromatherapy blends that may help a little? Pls msg me on sinead@yogandha.com if you’d like. 🙏💚

    • 15/11/2021 by Janine

      Thank you for your lovely offer Nicole.

      Sinead thank you so very much for the beautiful pamper pack, so thoughtful and kind ♥️

    • 15/11/2021 by Janine

      Thank you for your lovely offer Nicole.

      Sinead thank you so very much for the beautiful pamper pack, so thoughtful and kind ♥️

  • 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.

      5 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

    • 15/11/2021 by Janine

      Thank you so much for your lovely messages Carol, Rena and Trish - it meant a lot ❤️

    • 15/11/2021 by Janine

      Thank you so much for your lovely messages Carol, Rena and Trish - it meant a lot ❤️

  • 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 http://www.hugocharitabletrust.nz/ 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

      6 comments  |  Login to leave a comment

    • 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 💖💖

    • 02/11/2021 by Flavia

      To Millie and Family,

      We are so very sorry and disappointed for you.

      And can only imagine what a very difficult time this is for you all.

      Please know we are thinking of you.

      Keep you courage and stay safe in your continued journey.

    • 15/11/2021 by Janine

      Thank you for your lovely messages Carol & Flavia. ❤️

    • 15/11/2021 by Janine

      Thank you for your lovely messages Carol & Flavia. ❤️