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Help Mia To Live Life

  • Almost three months on from surgery

      4 December 2023
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    We’ve been back in NZ just over a month now and Mia is settling in well. Recovery from this type of surgery is typically between 6 and 9 months, so she has a long road ahead.

    The best news is she can eat anything and everything. She’s ravenous and is really enjoying all foods. We had an ultrasound done just before we left Germany, and all her compressions have been fixed. The surgery was a huge success.

    Now she just needs to rest and recover from the surgery (which was brutal). She is in a lot of pain and her muscles are still very weak but she is working with a physio and things will improve over time.

    Three NZ girls/young women with EDS have recently died, which is so tragic. I am so grateful that Mia was able to get this lifesaving surgery.

    Thank you for your help and support and if you could share this on your social media pages as Mia’s fundraiser is only open for another 15 days.

    Tara x

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    • 04/12/2023 by Janice

      what wonderful news... onwards and upwards Mia.

  • Update - out of surgery but a long road ahead

      21 September 2023
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    Mia had surgery on Tuesday and it’s been a rough couple of days (pain wise) but the surgeons say it all went well and they are pleased with how she is coming along.

    We have another 5 weeks in Germany (two at the hospital here in Düsseldorf), so if you could continue to share Mia’s Give a Little page on your social media pages I’d really appreciate it.

    Thanks Tara

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  • Flying to Germany in two weeks

      21 August 2023

    I can’t believe we are flying to Germany in two weeks. I’m not quite sure how Mia is going to cope with the flight (one leg is 17 hours to Dubai) as she has extreme back and abdominal pain and then a further 6 hours onto Berlin - but at least we know she’ll get the treatment she needs once we get there.

    Mia has her scans on the 7th of September in Leipzig and then we train across to Düsseldorf for surgery on the 19th and a two week stay in the hospital.

    It’s getting very real now, and a little scary, but we’re trying to stay positive and I know she’ll be in good hands.

    Thanks to everyone who has donated and if you could share Mia’s page on your social media - that would be great. Thanks Tara x

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    • 22/08/2023 by Janice

      That’s such wonderful news. All the best Mia.

  • Thanks 😊

      29 July 2023
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    Thank you so much to everyone who has donated in just one week - we’ve almost raised $10,000 ❤️❤️

    Last weekend I bought Mia’s wheelchair for the trip to Germany and it’s given her a little bit more freedom - being able to come on walks with our dog Elle.

    We really appreciate how generous everyone has been and would love it if you could share this update on your social media pages.

    Tara x

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    • 29/07/2023 by Nigel

      Hi there. Are you aware of Te Whatu Ora's High Cost Treatment pool (HCTP): here's the relevant link:

      https://www.tewhatuora.govt.nz/our-health-system/hospitals-and-specialist-services/high-cost-treatment-pool/#about-the-fund

      Your treating specialist may not be aware of this fund, and it is not well publicised. However, you appear to meet all of the criteria for assistance under the HCTP, and your specialist should make an application for assistance from the pool. Don't take no for an answer, because, as usual with just about any NZ govt assistance, you will likely get initial pushback. Getting the media like Stuff) to do a story about you is often also very helpful in getting the wheels oiled. Hope this information helps. Nigel A.

    • 31/07/2023 by Tara Stewart

      Thanks Nigel. Our vascular surgeon is not in our DHB area and is therefore unable to make the application on our behalf (it has to be a specialist from our DHB area). I’ve booked Mia on to see an Auckland vascular surgeon and they’ve managed to squeeze us in next week, but that will only leave 4 weeks until we head to Germany. There has only been one successful application for funding for this type of surgery (that I know of) and that took over 5 months to be approved and Mia can’t wait that long.

      Hopefully the Auckland surgeon will put in an application to cover the surgery on the day that we meet with him (but it’s quite a complicated application), but they won’t fund it retrospectively and are highly unlikely to approve it in 4 weeks, so chances are the costs will be entirely on me, family, friends and strangers supporting Mia through her Give a Little page.