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CRPS Warrior mum needs help to get overseas for urgent medical treatment

  • NZ Herald news story

      28 June 2024
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    I face some huge fears of mine the other day when I talk to a journalist for the New Zealand Herald. I was actually an old school friend of mine so that made the whole process a little bit easier but is very hard putting out there to the world like that Part of what happened to me. I feel like it was only the top of the iceberg because Siri is such a big one but I feel amazing now for having spread more awareness about this disease. Because it just isn’t given much time because usually people don’t want to hear about it. It’s too hard it’s pain and people don’t understand it . Especially me most people see me and they think that I look fine it can’t be that bad you know that I must be exaggerating. And that’s how the medical system has treated me here for years and it’s traumatised me. I’ve linked the article and all my social media and you can also find it if you just search CPM and google it seems to come up first or jump onto the New Zealand Herald website and this is the title below; Complex Regional Pain Syndrome: Kiwi mum with ‘most painful condition’ seeks life-changing treatment

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  • New Update 26/6

      26 June 2024
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    Hi friends, we have had to update our goal again, as we all know things are expensive, and new costs keep coming up. For example... I need to get a wheelchair I can take to America and that I can use on my own. It is not currently safe for me to be in a wheelchair where someone has to push me, and as I can't push myself as my CRPS is based in my hands then I effectively can't be left alone. There has been a couple of times recently I have had to be home alone, and it becomes quite scary when you literally can't leave your bed or even get yourself to the bathroom. We are also having trouble with various agencies we have been going to for support (such as for some home help or mirimiri or funding for a wheelchair or an OT) have been saying that as CRPS is classed as a neurological condition, it is not covered by general disability... We are facing hurdles everywhere we go. But we are trying to stay positive we will reach our goal. I don't know what else to do. The alternative is too scary to consider... thank you so, so much to everyone who has donated so far. It means the world to us <3 Also, here is a photo of me in my bed from last week, with the man who is holding it all together. The one who makes me smile and gives my life meaning and joy through all this pain....

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  • Update 24/6

      24 June 2024
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    Thank you so much to everyone for your support so far with my fundraiser. My family and I are eternally grateful for every dollar towards our goal to get me better. We have had to update the goal to $60,000- this is due to a few things but mainly the fact that I need more infusions than we originally first thought. So that costs more money. We have pretty solid plans set in place with Dr Hana in Florida. He is one of the world leading CRPS specialists and has done some of the most infusions for CRPS. I’ve also extended the closing date of the fundraiser for another few weeks to give us enough time to get the money together we need to go. Thank you again to everyone who has donated so far <3

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  • Fundraising goal

      14 June 2024

    From what we have calculated so far $50,000 should get me a course of 5-10 infusions and appointments with one of the leading CRPS specialists in the world (he is based in Florida), flights, visas, I might need a nurse there, a wheelchair and accessible accommodation.

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  • Wheelchair and treatment plans

      14 June 2024
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    Thank you so much to everyone who has donated so far. yesterday we picked up a wheelchair because I now can’t even walk to the bathroom. We have found a doctor in Florida and we are in talks with them at the moment. We are still in the process of gathering costs but we are thinking we are going to need at least $50,000. we’re selling our cars, we’re getting a credit card and if we have to we will sell our house to get there. Despite all this and the excruciating pain I am in I feel strong and I feel like I can fight this. Thank you all so much for your support <3

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