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Help Millie fight Ehlers Danlos syndrome and its life threatening complications

  • Thankyou !!

      18 July 2020

    Thankyou to everyone, we are so grateful to each and everyone of you.

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    • 07/11/2020 by Allyson

      Hi. My daughter is 12. We are in NZ she has what appears to mostly likely be MALS/neurogenic and SMAS. We are desperate for answers. If you can manage I would love to talk to you. I'm on Facebook as Ally Lycett. I have sent her images tons Dr in the States but I dont think the tests were performed accurately. I hope all is going well for you and Millie.

    • 07/05/2021 by Catherine

      Hello I am very touched by your story and your amazing daughter Millie. We have similar problems and have just returned from a 3 week stint in the Children' s Hospital here in Melbourne. We are still working through causes. I have a couple of diagnostic suggestions for you to consider with Millie's extreme GI issues.Has anyone ever spoken to you about mitochondrial disease? It can co-exist with something like EDS. It can cause very complex GI journeys, including pain and gastric failure. Please feel free to email me on caw1968@bigpond.com. Best wishes, Catherine

  • The future

      17 July 2020

    Due to Millie’s fragile health, travel restrictions and differences in opinions of medical specialists, we will not be travelling outside of NZ for treatment anytime soon.

    Every dollar has helped enormously and contributed to many unfunded medications and supplements, genetic tests, overseas specialist consultations, integrative medical doctors, and complementary therapies. It has also enabled the privilege of being able to spend precious time supporting and caring for Millie at home.

    We have weighed up the pros and cons and Millie has made the decision that she doesn’t want any more medical interventions or pharmaceuticals as they have caused stress and side effects.

    She is instead focusing on holistic practices and therapies, which have little potential to worsen her condition. In the last 5 weeks, she has begun working with an amazing Ayurvedic practitioner and has for the first time in this whole 6 year journey seen an improvement in her symptoms.

    We do not know what the future holds, but are remaining positive that good health for our beautiful daughter is around the corner.

    We wish to thank each and every one of you for your generosity, kindness, and support. You have, and will continue to give us strength and hope.

    Janine & Millie xx

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    • 19/07/2020 by Rachel

      Dearest Millie and Janine and whanau,

      My heart skipped with happiness and excitement to read of an improvement of symptoms after beginning the Ayurveda path! May it only bring more and more health and happiness and alleviate all symptoms and all causes. So much love and healing positive vibes from me and my family to yours.

      Heres to the rest of 2020 lighting up with miracles for you Millie!

      Shine on beautiful one.

      Xo Rachel

    • 20/07/2020 by Rob

      Great to hear about the new direction and the early signs which sound really positive. Hope Millie's condition continues to improve. All the very best.

    • 20/07/2020 by Christine

      Hi Janine and Millie. Thanks for the update. How wonderful to be relieved of some of your symptoms Millie. Fantastic news! Warm regards from Christine, David, Madeline and Annabel.

  • Searching for answers

      12 June 2020

    After the initial disappointment of not getting to the US due to Covid we took the positives from it. We managed to get a telemedicine consultation with Dr Schofield due to regulations becoming more relaxed. She referred us to Dr Richard Hsu, a MALS (median arcuate ligament syndrome specialist) in Connecticut. Millie has the anatomy and symptoms for this and it is prevalent in those with hyper mobile EDS. We are presently trying to get further MALS testing done via NZ gastroenterologist Chris Cederwall. Chris is also trying to resolve Millie’s malnutrition and complex pain. We are also getting opinions from NZ and Australian MALS specialists.

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  • Extending the closing date

      12 March 2020

    We have flights and accomodation sorted and the appointment with Dr Jill Schofield in Denver booked. At this stage we simply don’t know how much everything is going to cost or how long we are going to be staying. An initial consultation is $3000, follow ups are $1000. Diagnostics, tests etc may be up to $5000. As far as treatments are concerned, Dr Schofield has access to many therapies that are not accessible for Millie in NZ. Some are compassionate supplies for a limited trial and very expensive. So we have decided it is necessary to continue with the Givealittle page. We will hopefully have some answers and recommendations for Millie soon. Will keep you updated. We are so so grateful to you all for your help.

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    • 15/03/2020 by Christine

      Dear Janine, Millie and Family.

      Thank you for the update. We think of you all often. With this message comes our best wishes and hugs all round! Christine, David, Madeline and Annabel

  • Travel to the USA

      12 February 2020

    We are counting down the days to 3rd April when we travel to Denver, Colorado. Dr Jill Schofield at the Centre for Multisystem Diseases has expert knowledge about EDS and its complications as well as access to diagnostics and treatments that are not accessible here in NZ. Millie’s health is continuing to deteriorate and all treatments available in NZ are failing her. And still Millie remains deeply positive, hopeful and grateful.

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  • Plans to see doctors in the US

      12 December 2019

    We have now had a number of gastrointestinal and neurological tests done. But frustratingly, even with these tests, still no one is able to figure out a treatment plan, other than just managing her symptoms. She continues to have severe pain, nausea, weakness, despite taking medications. We have decided not to try stem cell therapy at this stage. Instead, we are hoping to get Millie strong enough to travel to Denver, Colorado next year to be seen at the Centre for Multisystem Diseases and to John Hopkins hospital Amos Clinic in Maryland. These clinics specialise in diagnosing and treating complex cases such as Millie. We are so grateful to all the wonderful, kind people who have donated to Millie’s Givealittle and to her supportive school classmates for the recent fundraiser. Every little bit gives us hope.

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    • 13/12/2019 by Jason Doidge

      Good plan Millie and family. All the best with travel to the John Hopkins hospital and finding an ideal treatment plan!

  • Current situation

      17 November 2019
    Main image

    Apologies for the long break without an update. We have had a few tests done in the past month, but the results are taking a long time to come back and due to Millie's critical condition we cannot afford to continue at this rate. Her pain, malabsorption and cyclic weakness are unfortunately only progressing. One of the few results we have had back is that her gastric emptying scan was normal, so it is unlikely pacemaker surgery will be the right option. The plan is for Millie to be admitted to the hospital tomorrow in order to speed up the process of finding and treating her GI and neurological symptoms, as well as stabilising her weight and managing her pain.

    We have had years of being let down by the health system and are devastated that it has gotten to this point without any real answers. We know that Millie has EDS and Behcets disease, but we are unsure of the exact way in which these diseases are affecting her body, but that whatever is going on is very serious. We have real hope this admission will be positive and give as at least some indication of what is going on so that we can make the best decision in her treatment. At present specialists in America, IVIG and stem cells are being discussed. Despite the pain and stress, Millie is remaining positive, holding on to the hope that one day she will be well and can look back on this hideous experience as something that strengthed her character.

    We will keep you posted, thank you all for your continuous support,

    Janine and Millie

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    • 18/11/2019 by Rob

      Thanks for the update. Keep up the fight, Millie! Sending out positive vibes for you :)

    • 18/11/2019 by Kim

      Millie, You are truly amazing, a tower of strength & resilience at a really really tough chapter in your life. Please know River, Chris, Tasman & I are right here by you and your family's side as you navigate this journey together. Your smile resonates your warmth, kindness & compassion - hold onto that warmth, kindness & compassion for yourself as we share ours with you. Much love xxxx

  • Heart warmed!

      18 October 2019

    We could not be more grateful for all of your support. These past few years have been terribly isolating for us all but particularly Millie of course. When we set up the page she honestly did not think we would raise anything, the shock on her face as your donations came in and continue to come in was priceless. We would all like to thank you for giving us hope, not only for Millie's treatment but also for giving us back some faith in humanity.

    Currently, we are undergoing the slow process of ticking off all the necessary testing to determine how mobile Millie's GI system actually is. Hopefully, we will have this process finished and the results back soon so we can create a temporary plan to keep her weight and health stable while we seek a long term treatment. Thankfully in the meantime, after weeks of rapidly progressing pain, we have finally found a pain medication that is effective.

    We will keep you updated,

    Janine, Mike, Millie, and Hannah

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