Back to page

Give Millie a second chance at life

  • Millie’s update continued

      20 November 2023

    It shocks and saddens me that people with preventable lifestyle disease receive compassion and funded treatment, while people like myself with rare conditions that are no fault of their own are gaslit and abandoned by our healthcare system. Most of the tests and treatments I need aren’t available here in NZ, and those that are are often not funded by the healthcare system or covered by private insurance. Due to the lack of knowledge and expertise on EDS I often have to travel to elsewhere in the country for medical care.

    Being vulnerable, sharing my story, and asking for help are all extremely difficult for me, but they are also extremely necessary. What happened/is happening to me is not okay, and I want to do all I can to prevent it happening to others.

    We still haven’t fundraised anywhere near enough to cover the cost of the surgery and are facing continuous medical expenses on top of it. Please share or donate if you can. Any fundraising ideas or help would be greatly appreciated.

    Love and gratitude,

    Millie

      0 comments  |  Login to leave a comment

  • Millie’s update

      20 November 2023
    Main image

    Hi everyone, it’s Millie here (finally). I just want to thank you all. I seriously can’t even begin to describe how grateful I am for your support and donations.

    Prior to surgery I spent several years on the edge of death weighing about 26kg. Doctors told me for three years in a row that I wouldn’t make it till Christmas. Nobody, myself included, expected me to survive. Because of the surgery I have managed to almost double my weight and have begun studying part time at university. The surgery has been truly life-saving.

    However, life is still incredibly tough. Although I no longer have AVCS, I still have Ehlers Danlos syndrome which causes constant issues throughout my entire body. On top of this I am struggling with the aftermath of severe chronic malnutrition and crippling C-PTSD from everything I’ve been through in the last few years. Prior to being diagnosed with EDS I was misdiagnosed with anorexia nervosa because I was young, female, and underweight. I was treated as less than human, cut off from my family, and locked in a psychiatric hospital for over two months where I was forced to live in a room with black mold and drink contaminated water. If I go out I put on a brave face and do my best to appear normal, you’d never guess how much I’m suffering internally.

    Continued on the next update.

      2 comments  |  Login to leave a comment

    • 21/11/2023 by Colin

      Hi Millie,

      It's great to hear that your health continues to improve. It's angering and frustrating to hear of how you've been treated; I too "fell through the cracks" ("polite" term) of the health system and can 100% relate to your experience (including the PTSD). I believe everything that you said.

      Some "random" thoughts that may (or may not!) help you to move forward:

      1. You weren't responsible for what happened to you. You ARE however responsible for working on your mental health going forward. Some may not understand that statement, so please let me explain further:

      Many who have been victimised by past events choose to remain victims going forward, but in my (pragmatic) experience, using prior trauma as an excuse to avoid putting in the hard work to move forward doesn't help long-term. The best path is usually not the easiest path.

      So I'm not saying that recovering from PTSD is easy - I'm not saying that it is quick - I'm not saying that one has to do it alone - I'm just saying that one needs to take responsibility for driving it. The past does not have to equal the future; being victimised in the past does not equate to us being victims for life.

      2. Pick your battles. You're quite right; our medical system is broken in many ways (and also competent in other areas). If you can be part of a groundswell that changes it for the good then that's fantastic, but attempting to do that will come at a price -- and it's likely that any efforts will be ineffective. Is it fair? ... nope - absolutely not; but that's the reality of what's been dealt regardless. My encouragement is to think carefully about where you expend your time and energy; both are limited quantities - and putting too much of both into something that's not going to change anyway is probably a poor investment. It sucks - it absolutely sucks - but nothing in life comes with a guarantee of fairness. If we "jump in the deep end" of trying to change it the reality is that we'll probably just sink. And no, it doesn't feel great to have to say that.

      3. In terms of on-going funding, one of the few things I've learned in life is that "a little" contributed by "a few", consistently, adds up to amazing things. I'm not a wealthy person, but I'd be more than happy to setup an AP to chip in a few dollars to you each and every month. It's not money that I would really miss - and I'm sure that many others doing the same wouldn't miss their contributions either; I think that that's far more likely to happen than repeat contributions to Givealittle. In a country of 5,000,000, just image the impact of just 1000 people chipping in just $10 a month to help your recovery. My encouragement is to explore that route. Sign me up as contributor 0001 if/when you're ready.

      Hope this helps :)

    • 21/11/2023 by Janine Aitken

      Hi Colin. Millie is most definitely continuing to put every effort into helping both her physical and mental health. Thanks for your words of encouragement and offer of support 🥰

  • Give Millie a Second Chance at Life

      25 September 2023

    It’s been nearly 6 months since Millie’s surgery in Spain. She’s doing everything she can to give herself the best possible second chance at life. It’s a real struggle for her each and every day to keep striving for this.

    Whilst Millie has recently managed to get some help from the MOH to help pay for the many ongoing unfunded/private medical expenses we still need your support as we struggle to meet the expense of all these needs.

    We live in hope that one day Ehlers Danlos syndrome will be understood and managed in the public health sector in NZ.

      0 comments  |  Login to leave a comment

  • A monster disease

      30 July 2023
    Main image

    The reality is that this monster disease affects every body system.

    Millie has other gastrointestinal problems including poor motility problems and malabsorption. She’s going to have Alimetry gastric mapping testing and trial Botox via gastroscopy. She has to travel to Wellington and Christchurch for these.

    Migraines are causing dizziness, vertigo, balance problems, another type of nausea and difficulty sitting upright and standing. She’s going to see a physio at the Otago polytech.

    She has mast cell activation syndrome which causes allergies and intolerances to pretty much everything including her own tears. Her skin and eyes burn.

    She has convergence problems with her eyes and needs prism glasses.

    Dysautonomias (nervous system dysfunction) including low blood pressure and heart rate make her feel faint.

    She has anaemia which is causing severe exhaustion and weakness.

    And yet, with chronic pain 7-8/10 and debilitating nausea, she manages to live with such strength and courage.

      1 comment  |  Login to leave a comment

    • 02/08/2023 by Cathy

      It is a monster and you show amazing strength and courage , sending love and best wishes to you all x

  • Hope

      8 July 2023

    This coming week Millie is starting part time study in psychology at Otago Uni. She will be able to study mostly online. Millie’s struggling to sit or stand without migraines and vertigo a lot. Her BP and HR are low and blood glucose levels fluctuate a lot which makes her feel faint. So she has been resting a lot. Thank you all for your support.

      0 comments  |  Login to leave a comment

  • The road to recovery

      12 June 2023
    Main image

    This road is not an easy one. Despite still suffering with severe nausea, migraines, insomnia, extreme fatigue and widespread pain Millie has been constantly putting in a huge effort trying to get herself better.

    She’s been doing strength training, practicing DNRS for nervous system regulation, taking the dog out for walks regularly and having counselling for trauma.

    Thank you again to every single one of you who have helped us. We are so grateful xxx

      2 comments  |  Login to leave a comment

    • 14/06/2023 by Teresa

      Looking great Millie! Keep up the good work, it must be so hard but you sound like a real trooper.

      Appreciate the update and hope to meet one day and go for a short walk with you. Tj and Don, Tekapo

    • 17/06/2023 by Janine Aitken

      Thanks Teresa & Don for your extremely generous support and kindness xx 🥰

  • Spreading awareness about these life threatening abdominal compressions

      15 May 2023
    Main image

    Millie gave an inspiring interview with ODT reporter Fiona Ellis. I am so proud of her. Throughout her debilitating illness she has shown such courage, strength, and sheer determination.

    She is looking towards her future now with real hope. Thank you again to everyone for their well wishes and support. We are so so grateful 🥰

      2 comments  |  Login to leave a comment

    • 16/05/2023 by Sandy

      🙏🙏🙏

    • 16/05/2023 by Tracey

      Thank you for you updated. She is very much in my thoughts.

  • How sick Millie has been

      10 May 2023
    Main image

    I have been going through old photos and have some that show just how sick, malnourished and fragile Millie has been throughout most of the 7 years of severe life threatening illness.

      0 comments  |  Login to leave a comment

  • Gratitude

      9 May 2023
    Main image

    We are so grateful to all of you who have so kindly and generously donated, supported and helped us throughout this difficult journey.

    Millie is so motivated and determined. She is working with a personal trainer to help with post op rehabilitation and is going to start with a physio next week and a new psychologist tomorrow.

    Being terribly unwell for over 7 years has really taken its toll on Millie’s mental health too. We are hopeful that she will make steady progress.

      3 comments  |  Login to leave a comment

    • 10/05/2023 by Susan

      Wishing you nothing but the best Millie , sending gentle hugs to you and your Mum

    • 10/05/2023 by Colin

      For me, the journey of recovery started after neurosurgery to remove a massive tumour attached to my spinal cord. Millie has suffered longer and been affected more than I was (although I was in severe pain and was practically chair-bound towards the end) but perhaps some of my experiences recovering may offer something of value anyway;

      1. Understand that recovery takes time. A lot of time. One needs to accept that. But big distances can be covered by taking just small steps in a consistent direction over time; far more than trying to do too much too soon and ending up going off-course or backwards.

      2. My recovery wasn't always consistent - some days I couldn't do as much as I did the day before, which was disheartening and make me wonder if I would ever recover. All I can suggest is "listen to what your body is telling you"; if it's saying "I've had enough for today" then "give it a break" - be kind to it - it's the only one you have and it has to support everything you do for many years yet. Compare change month-on-month (or longer) - not day-on-day.

      3. Building habits and routines that were healthy for me (both physically and mentally) was very helpful. James Clear's excellent book Atomic Habits was quite extraordinary in both the tools that he provided and the nonjudgemental clarity of the explanations for those mental tools. Try not to fill our brains with irrelivant "noise" from much of what goes on in the world with people trying to get attention; learn to filter out what isn't important so one has more time to relax and/or focus on what IS important.

      4. The PTSD is very, very real. I'm guessing that that's what's kicking in now for Millie. For me, that was something that improved with time. I think it's important to acknowledge that we're all human - we all have limits - we all make mistakes - and we need to remember to be kind to ourselves and give ourselves the time we need to heal with the same patience we'd give to other people.

      It's so nice to read that Millie now has a bigger team than ever of people around her who know what they're doing and have her best interests at heart; I'm sure that one day everyone will look back and appreciate just how valuable that was.

      All the best.

    • 11/05/2023 by Janine Aitken

      Thank you Susan for your lovely message and Colin thank you for your words of encouragement xx

  • Home sweet home

      6 May 2023

    Millie had very good care by nurses and the vascular team who followed up with an ultrasound and a medication review. We feel supported. Millie was discharged after 2 days and she saw her GP yesterday who is also very supportive and collaborative. We are so grateful.

    Millie is finally starting to feel like things are slightly better.

    Thank you to everyone who has supported us on this journey. 🙏🥰

      2 comments  |  Login to leave a comment

    • 07/05/2023 by Steve

      So glad there are signs of improvement 🙏

      Steve

    • 09/05/2023 by Janine Aitken

      Thank you Steve xx

  • Abdominal vascular compression syndromes explained

      2 May 2023

    https://www.facebook.com/groups/174279784980073/permalink/179067624501289/?mibextid=W9rl1R

      3 comments  |  Login to leave a comment

    • 02/05/2023 by Wendy

      Praying that Millie will get the specialist help she needs. She seems a strong and resilient young lady, bravely coping with so much. My thoughts are with all the family.

    • 02/05/2023 by Janine Aitken

      Oh thank you Sandy. You’re a sweetie x

    • 02/05/2023 by Janine Aitken

      Thank you for your lovely kind message. 🙏

  • Unbearable nausea and pain

      1 May 2023
    Main image

    Millie’s extreme nausea is proving very difficult to manage. She was given an X-ray and transferred to a surgical ward at 4am. In the morning the vascular team led by Dr Jo Krysa reviewed her case and are liaising with other specialties.

    Millie is grateful that there is a wider range of anti nauseants available here in NZ compared to Spain. There is one that she is having intravenously and it’s taking the edge off the nausea sometimes. She has had moments of rest but no sleep.

    We are very grateful for the care she is receiving.

      3 comments  |  Login to leave a comment

    • 02/05/2023 by Colin

      Wow - this is just heartbreaking to hear. I "fell through the cracks" of the NZ medical system about 3 years ago - the turning point was when they finally found the "smoking gun" and from there, the "oceans parted" and Neurosurgeons, air ambulances, and all manner of resources suddenly materialised due to it being declared an emergency. The only "light in the tunnel" that I'm seeing here appears to be that Millie will finally get the resources and attention she needs from our health system. We can only hope that the trained professionals can get to the bottom of what's going on and help.

    • 02/05/2023 by Sandy

      Thinking of you all and sending prayers for Millie🙏🙏🙏

    • 02/05/2023 by Janine Aitken

      Thanks Colin. Yes sadly many people are failed by the medical system. I hope you’re doing well.

  • Hospital

      30 April 2023
    Main image

    After waiting for over an hour for an ambulance Millie has been admitted to Dunedin public hospital. Her pain and nausea are unbearable. It’s such an awful thing watching your child suffer so terribly. The vascular surgery dept has been informed and they are reviewing the medical notes regarding the surgery for abdominal vascular compression syndromes from Dr Morata Nausea is 12/10 and pain 10/10. I will keep you posted. Thank you to everyone for your support generosity and kindness.

    It’s heartbreaking that these brave young women are being so let down by the NZ health system.

    https://www.newshub.co.nz/home/new-zealand/2023/04/kiwi-women-forced-to-spend-thousands-travel-overseas-to-treat-rare-ehlers-danlos-syndrome.html

      0 comments  |  Login to leave a comment

  • My brave beautiful daughter

      28 April 2023
    Main image

    The journey home was exhausting and difficult for Millie. Our bags could not be checked in automatically by Portugal airlines to Emirates. So we couldn’t access the business lounge and Millie ended up pushing hard chairs together at a busy airport cafe to lie down on for 4 hours. Lisbon to Dubai was 7 hours and then we only had 2 hours between the next flight to Auckland which was 15 hours. We are now in Auckland resting overnight and will finally arrive back home in Dunedin tomorrow afternoon. Millie is exhausted, in a lot of pain and still has terrible nausea. Her body has been through so much in the last few weeks and she has been very malnourished and low body weight for 7 years. So this has really taken its toll on her. We will see how Millie is upon our return before we make a decision about the need to go to public hospital or not.

      1 comment  |  Login to leave a comment

    • 29/04/2023 by Colin

      The finish line at the end of the marathon is so close. Hang in there!

  • Goodbye Hospital Quironsalud Malaga

      26 April 2023
    Main image

    We are on the home stretch; we are organising medications, wheelchair assistance, bandages, packing bags, thanking Dr Morata and the kind nurses.

      4 comments  |  Login to leave a comment

    • 26/04/2023 by Melissa

      Wishing safe travels home for Millie and mum x

    • 26/04/2023 by Steve

      I do hope your return trip home goes well.

      Steve

    • 26/04/2023 by Sandy

      Safe travels to you both. Hope your trip home goes well. Thoughts are with you both. Sandy xx

    • 28/04/2023 by Janine Aitken

      Thank you for your lovely messages of support xx

  • Can’t wait to get back home

      25 April 2023

    Despite all the post-op complications, we are planning to travel back to NZ with an arrival date of April 29. Millie may require inpatient hospital care upon our return to manage fluids, nausea and pain. We are urgently trying to get input from the vascular surgery dept at Dunedin hospital, pain clinic and physio support, nursing care for wound management etc. I am hoping and praying that Millie will have good medical care back home. The 34 hours of travel are going to be very very tough for Millie. She struggles to sit upright without severe nausea. But we both believe that getting back home sooner rather than later is the right decision.

      0 comments  |  Login to leave a comment

  • Problems post stent procedure

      24 April 2023

    Since the stents were placed in the left iliac vein on April 19 Millie’s nausea has been much worse and she has back pain from muscle spasms. She now has a high fever of 38.9C. Blood tests have been ordered and Millie has not been able to get out of bed for 24 hours now. It’s very concerning. With it being the weekend there are fewer staff and the nurse today is not a friendly person sadly. It’s very difficult and lonely.

      0 comments  |  Login to leave a comment

  • Homeward bound

      23 April 2023
    Main image

    Despite all the persistent nausea and pain we are planning to return to NZ on April 28. It will be 17 days post op when we begin the long journey home on April 26. It’s very daunting knowing how rough things still are for Millie. But the hospital have given clearance for her to travel and were planning on stopping our stay on April 24. I am hoping and praying for the journey to go as smoothly as possible for my brave brave daughter.

      2 comments  |  Login to leave a comment

    • 23/04/2023 by Colin

      It took just a few hours for me to fly back to Nelson (via Wellington) from Christchurch a few days after some major surgery. Looking back, it was tough - even though I was well looked after. I'm at a complete loss to appreciate what making the journey you're about to make will be like.

      3 suggestions that might help:

      - Dehydration makes everything worse - and aircraft at altitude are very dehydrating. Be sure to be proactive about hydration levels.

      - Despite everyone falling over themselves to help, the journey still stirs up wounds. Take the "darn" pain meds!

      - It's likely that PTSD will kick in pretty hard at some point (it did for me at the start of the journey home). Expect that to be a bit overwhelming for a while. For me, it seemed like every little noise was loud and irritating - even the TV programs flicking between scenes was too much - and even without meds it's likely that she'll have some pretty weird dreams.

      The good news is that it's all like a journey on a horizontal escalator; you hop on it - it takes you on a journey - but there's also a destination; a time when you arrive and you hop off of it. It may not always feel like it, but every step of the journey takes you closer to that getting off at the end. After a while it all becomes just a memory.

    • 25/04/2023 by Janine Aitken

      Thanks so much for sharing this with us Colin. I hope you’re doing well now.

  • So so grateful for your support!!

      22 April 2023
    Main image

    Wow!! After a night of very little sleep it has been so heartwarming to see all the support generosity and kindness of so many. We are feeling so blessed. 🙏🙏💕💕🌈🌈

      2 comments  |  Login to leave a comment

    • 22/04/2023 by Sandy

      🙏🙏🙏

    • 25/04/2023 by Janine Aitken

      Thanks so much Sandy. You are so lovely 🥰

  • Allergic reactions

      22 April 2023

    Today has been a very frightening time for us. Millie was given a medication that caused a full on allergic reaction; difficulty breathing, muscle spasms and eye rolling. Luckily we picked up that something like this was going on and the nurse listened and believed us. Millie’s nausea is still unrelenting. Thank you to everyone for your support and kindness. We are so so grateful

      0 comments  |  Login to leave a comment

  • Millie’s condition is deteriorating

      21 April 2023
    Main image

    Millie’s condition has seriously deteriorated Her nausea has been unrelenting and no medication is helping. She is not able to drink or eat, sit or open her eyes. Her headache is so severe. She is dehydrated and in terrible pain. She has had another scan and we are waiting for the doctor. It is frightening. Most of the nurses don’t speak much English and they have very little kindness or compassion.

      0 comments  |  Login to leave a comment

  • Stenting for May-Thurner syndrome

      20 April 2023
    Main image

    Millie had stents put in to open up the left iliac vein which was very compressed.

    Millie’s had symptoms of abdominal vascular compressions since 2016 aged 15 years old.

    Her compressions were very severe. The pain and nausea from the main surgery has been brutal and the stenting has caused severe back pain.

    She is resting as much as she can and we are keeping positive.

    Thank you to everyone who is donating.

      0 comments  |  Login to leave a comment

  • Main surgery complete!

      17 April 2023
    Main image

    Millie had her main surgery on April 9. We arrived around at the hospital around midnight and she had the surgery around 3 pm the next day. The compressions - Superior mesenteric artery syndrome, Median arcuate ligament syndrome and Nutcracker syndrome - were even more progressed than Dr Morata expected (due to years of neglect and abandonment by the NZ medical system). So far, the recovery has been brutal. Language barriers with staff, mental and physical exhaustion from 40+ hours of stressful travel, a nasty respiratory virus, and an ear infection, have compounded this. However, Millie has been incredibly strong, positive and determined. She is making lots of progress in the right direction. There will be more testing and possible stenting for the final compression syndrome - May Thurner - later this week.

    Thank you so much for your support

      2 comments  |  Login to leave a comment

    • 29/04/2023 by Miranda

      We are praying that a return to New Zealand will mean less stress and anxiety and will help Millie recover with less pain and suffering.

    • 30/04/2023 by Janine Aitken

      Thank you for your lovely message 🙏👍