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

  • Update

      4 September 2024

    Hi to everyone that’s donated so far I wanted to say thank you and we haven’t quite made it and we’re gonna need more money than we originally thought so it’s looking like we’re going to have to sell our house as well.. I tried to post an update the other day with photos of my electric wheelchair that I was able to buy with some of the donations. I don’t know what happened to that update but thank you everyone having that wheelchair has enabled me to get some independence back and be able to do With my children again, And just feel more like A real human being. We are getting things thrown from all sides still, I am still down and not and traumatised by people who supported me and loved me.. It’s breaking my heart. And there is nowhere we’re gonna break our family apart. I just wanted everyone to know that we are still fighting with everything we have and we will go to the ends of the to get this treatment.. I promised to post a better update with some photos and things like that in a couple of days time. But my health is getting worse and worse and I am in so much pain every day. But we remain positive and we are trying to manifest healing and positive energy, and we will never ever give up hope x

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  • Italy Treatment Plans <3

      4 July 2024
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    We are over halfway with my fundraiser, and everything has been falling into place so beautifully! I was in the paper again, in the Wairarapa Time s Age! I also got in to see a Pain Medicine Specialist Drs on Monday! He was so fantastic; he took me seriously and was on the cutting edge of CRPS research and treatments. We came up with a treatment plan to keep me going until I get to my overseas treatment. And now have some much better pain relief. We have also decided to go to Italy! I was actually approved for the treatment there before I started this give little. The treatment in Italy is only 12 days, so we wouldn't have to take the children with us. It is a much gentler and less invasive treatment, and rather than just trying to mask the pain for a while, it aims to try to treat the root cause of the CRPS. It is also a more 360-degree approach to treatment and offers a wraparound service. You have 4 Neridronate infusions and Clodronate infusions. Infusions go alongside other therapies such Light therapy, Biophysical therapy, sessions of Neuromuscular Re-education, Osteo-articular and muscle manipulation as well as a registered nurse, translators, airport pickup, accommodation, food, visits with the CRPS specialist/doctor, a dedicated Patient Care Coordinator and priority-line booking at the Hospital so you skip any waiting lists! This costs $27.800€. We are so close. Thank you all <3 https://www.medicaltourismitaly.com/medical-research/treatment-of-crps-official-in-italy/

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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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