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Amy's fight to keep smyelin

  • Change of location

      23 February 2016

    For those of you who have been along for the journey with me since the beginning, i'm sure you're about as sick of the location updates as I am! Our first goal was Russia, then we accepted a placement in Israel because they could see me for treatment much sooner....then the Israel clinic ran into issues and had to postpone my treatment. SO, here we are with our 3rd and I REALLY hope, final location for treatment. I am starting my HSCT journey (which truly started about 2 years ago now) on March 28th 2016. The incredible, kind and compassionate team at Northwestern hospital in Chicago, Illinois have accepted me on compassionate grounds following the issue with Israel's treatments. I've never felt more confident with the treatment than I do being in Doctor Burt and his teams hands. Dr. Burt pioneered stem cell transplantation for MS patients more than 21 years ago and is an absolute master of his craft. Fingers crossed that everything goes to plan over the next month, but assuming it does, we're all set for a couple of months in the USA!

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    • 25/02/2016 by Thelma

      Thank you for keeping us up to date. We will be thinking of you Amy

  • Change of plans....

      4 February 2016

    Having spent most of this morning pretending this isn't happening, I know i'm going to have to get a grip and face whatever is coming....

    I woke to an email from the treatment centre in Israel where my HSCT is meant to commence on February 7th. They briefly informed me that they are having issues with the Israeli ministry of health and until such a time as the differences of opinion can be ironed out, my treatment has been postponed. As far as I can work out, all treatments are being halted in Tel Aviv apart from the ones who are too far in the process.

    The overwhelming devastation is like a wave that keeps on coming. I'm sitting on my bed looking at all our packed bags and wondering what the hell to do next. We were due to leave the country in 4 days, spend two weeks in London with my dad then head off for treatment. I can't fathom the fact i've had endless tests, injections, scans and appointments costing tens of thousands of dollars to prepare for this. Not to mention the flights and accommodation that are all booked and paid for. Perhaps most painful of all is the failed ivf cycle that we endured and now have to wonder if we may have had time for a second attempt.

    The plan now is to get to any treatment centre in the world that offers HSCT and start as soon as possible. All our plans are totally up in the air and we are waiting in absolute frustration for it not to be the middle of the night in the other side of the world to try and get some answers.

    I know we will resolve it in some way, but dealing right now with the fact Luke and I have both quit our jobs, packed up, organised house sitters and organised our entire lives, future, fertility and finances around this next step is outrageously frustrating. The light at the end of the tunnel is suddenly very dim and feels a million miles away.

    I just felt like all the people who have been supportive of me and followed, sponsored and donated to my cause should be kept in the loop. We're by no means giving up and are still totally committed to finding a centre and having the treatment.

    So if you were wondering in a week why i'm still here and haven't left the country, yeah...thats why....

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    • 15/02/2016 by Thelma

      The "holy dusters" in Burton are praying that you get your treatment soon somewhere.

  • Fundraiser auction

      15 September 2015

    On Saturday 12th September we held a fundraising Auction in Auckland. We were overwhelmed with donations of auction items for both our live and silent auctions. It was a fantastic evening with so many kind people donating goods, time, support and company. I'll soon have an accurate total, but at this stage we have raised about $17k from the auction.It wouldn't have been possible without all the kind people who helped set up, clean up, came along, bid and shared the evening with us. Thank you to all involved!!!

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    • 25/01/2016 by bhntvyet

      01/01/1967

  • New location!

      5 July 2015

    Hi all! Quick update - Having been in touch with several different hospitals around the world that offer HSCT, I have taken a place in Tel Aviv, Israel for February 7th 2016. A lot sooner than I thought and a different set up and process than Moscow, Russia but excited to get things going sooner than we anticipated. Will keep you posted as we get closer! ??

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    • 25/01/2016 by bhntvyet

      01/01/1967

  • Movie fundraiser

      8 April 2015
    Main image

    Hi all! My mum has organised a movie fundraiser evening. The poster attached has time/date/details. Please feel free to email the address' on the poster and book yourselves some tickets for a fun night out!

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    • 09/04/2015 by Nicola

      Hi,

      I am happy to receive ticket orders and have a dedicated bank account for hassle-free payment. Tickets can be collected on the night if pre-paid.

      E-mail addresses (in case they are a bit small on the flyer) are:

      nsaywell@aut.ac.nz OR jreeve@aut.ac.nz

      Looking forward to a fun night!

      Niki Saywell

    • 25/01/2016 by bhntvyet

      01/01/1967

  • Feeling grateful!

      16 March 2015

    Feeling particularly grateful for everyone's support on here. Having read some fairly harsh and critical comments on the article 'stuff' wrote about me, I'm so grateful to the people who have chosen to help and support me. I can't thank you enough.

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    • 25/01/2016 by bhntvyet

      01/01/1967

  • New MS trial in UK

      5 March 2015
    Main image

    My grandma lives in the UK and has been doing sewing projects and repairs in return for donations for my cause...her neighbours heard about my fundraising and quest for treatment and cut out, scanned and emailed this clip to my mum. It honestly blows my mind how many people have reached out, donated and thought of my family and I. People I barely know or don't know at all have been generous beyond what I thought was possible and I have to fight back tears every time someone wishes me well or reaches out or donates....I feel so undeserving of the unwavering support but overwhelmingly blessed and grateful.

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    • 25/01/2016 by bhntvyet

      01/01/1967

  • February 2015

      24 February 2015

    Just a quick update to keep everyone in the loop....there has been an overwhelming response to my givealittle page and I am so humbled and grateful for every single dollar donated. A friend of mine has kindly donated her time and expertise to film and produce a short video that further explains my cause. The video can be found on my cause page. Thank you to everyone who has donated, shared, posted and spread the work. My family and I are eternally grateful.

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    • 25/01/2016 by bhntvyet

      01/01/1967