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Alice needs your help!!! Help Alice get her life back by raising funds for a lifesaving surgery in Germany

  • 3 months!

      7 June 2024
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    It’s officially been 3 months since my surgery!

    Looking back at the last 3 months and beyond there are so many improvements, big or small. I’m managing to go on walks, shopping, seeing friends, I’ve started driving again, going out for coffees. These are all things that before surgery were basically impossible and I haven’t been able to enjoy for almost 3 years so its been really nice being able to do these things and gain some independence and normality back.

    I’m still dealing with a bit of pain and fatigue but overall in terms of AVCs I think I can say that so far the surgery was a success. I don’t have any flank pain, no stomach pain, I can eat, walk, stand and my body is just functioning better in general. In no means am I 100% better but I’m only 3 months into what they say is a year long recovery filled with ups and downs so its still early days. It does however mark a milestone where the tissue has healed and I can start using my body more and hopefully build some strength to aid my recovery. I won’t lie this recovery has been a mental challenge but I’m getting there and I’m hopeful things will continue to improve so I can begin to think about work, uni and so much more!

    I wanted to say a massive thank you to everyone that’s donated, fundraised and supported me on this journey. None of this would have been possible otherwise, so me and my family are so beyond grateful ❤️❤️

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  • 6 weeks post op

      25 April 2024
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    Tuesday marked 6 weeks post op and honestly that time has flown by. I’ve been back home for 2 weeks which has been so nice although a bit tough mentally. The enormity of the surgery and the journey leading up to it has been a lot to process for both me and my family. The flight back from Germany really took it out of me and jet lag on top of that has made it a rough couple of weeks but things are starting to get a bit more normal. I’m managing to go on small walks most days which seems so crazy to me considering 6 weeks ago prior to surgery I could barely walk 100m without feeling like I was going to pass out from POTS symptoms or my leg giving out. For the first time in 2.5 years I’m not on any medication for my heart or pain which is such a great feeling and crazy even to my doctors.

    It hasn’t all been positive and I don’t want to give people the wrong idea that I’m 100% better because in reality recovery is and has been tough and definitely not linear. There are days where I have random surgery pains and lots of tiredness as well as back and rib pain which can be hard not to get caught up on. There’s still a long way to go but looking back at where I was before the surgery and even 1-2 weeks post op the improvements are so insane. For now my focus is on recovery and continuing to build on my strength and eating. I look forward to slowly getting back to normality and being able to do more hopefully soon

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  • 2 weeks post op - Discharged!

      26 March 2024
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    After 14 days in hospital I was discharged yesterday. The last 2 weeks have been spent trying to gain strength and do things like learn how to sit again to now being able to walk small distances. I won’t lie they were probably some of the toughest days of my life for both me and my family trying to manage pain and also for my body learning how to function in a new way but each day I’m feeling stronger. The care provided by the doctors, nurses and staff at the hospital was amazing and made recovery as smooth as possible, while also making us feel very cared for. It’s still early days but I’m seeing improvements in symptoms that I was suffering pre op which makes the tough days seem worth while. Dad also made it to Germany last week which was a much needed familiar face. We will spend the next 2 weeks in Dusseldorf where I will continue to rest and recover while also being a bit of a tourist before heading back to NZ.

    Thank you again to everyone for supporting me and my family on this journey, we couldn’t do it without you 🫶🏻

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  • 1 week post op

      18 March 2024
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    Sorry for the lack of updates, it’s been a pretty hectic week. Surgery went ahead as planned on Tuesday last weeks so it’s day 7 post op today. Surgery went well but it’s been a rollercoaster of a week with highs, lows, lots of pain but things are improving. I was sitting up day 2 post op, walking day 3 and now am managing to get around relatively unassisted. I’m also eating, starting slow but so far tolerating it well. The pains been tough but we’ve been well looked after, the nurses, doctors and staff here are all amazing. Recovery will be long, but hopefully small improvements continue this week!

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  • Hello from Germany!

      8 March 2024
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    After a long 26 hours of travelling we made it to Germany on Monday. Since then we’ve explored Frankfurt and Leipzig, taking in bits of pieces of Germany. It’s such a beautiful country although definitely cold!

    Yesterday I had my scans with Prof Scholbach. He was super lovely and did a very thorough ultrasound which revealed a number of severe compressions and other problems. It was a lot more than we were expecting and has been a lot to digest but it’s also a good explanation as to why I’m suffering so much pain all the time. It’s also reassuring to know I’m in a place where treatment is available. We will be catching the train to Düsseldorf on Saturday where we will meet with the surgeon and discuss the treatment plan and all going well I will have my surgery on the 12th.

    Unfortunately the costs are starting to add up so we have decided to extend the goal date. This will allow us to keep fundraising once I am back from Germany.

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  • 1 week to go!! Thank you

      25 February 2024
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    1 week to go! It’s been a busy few weeks organizing last minute forms, medications and everything we need for Germany, but we’re getting there

    We wanted to say a big thank you to everyone who has donated so far, without you this wouldn’t be possible. A special thanks to Miles Construction and the businesses associated with them, Luxe & Duke, friends and their delicious baking, flowers, an incredible art exhibition, bbq, and all the other kind donations and fundraisers that have happened over the last few months.

    We had such a successful bbq at herne bay rackets last week so thank you to everyone who came along and also to those who gave their time to help out. The amount of people that came down to the club was surreal and it meant so much to me and my family to have friends, family, members and people from all over donating, bidding and supporting us on the final step before Germany.

    Also to friends and family for the ongoing love and support we couldn’t do it without you so thank you

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  • Surgery Dates!!

      18 January 2024

    We have had confirmation of surgery dates!! The scans with Prof Scholbach will be on the 6th of March and then I’ll be admitted on the 11th for surgery on the 12th which I’m feeling both nervous and excited for. It’s been a tough few weeks with pain and other symptoms but getting surgery dates is a big motivator to keep fighting. This wouldn’t be possible without all the donations and support we’ve had and we are so grateful to everyone so thank you!

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    • 23/01/2024 by Olga

      Great news. I would like to wish you perseverance, patience, strength, which you will definitely need, and of course, good luck. May everything turn out well. I hope that the scan will provide an answer and allow you to choose the most optimal treatment that will help you. I pray for you and wish you recovery with all my heart.

  • 2024 update

      1 January 2024

    Happy New year!!

    It’s been nice taking a break and spending Christmas with family even if it looked a little different this year. So ready to bring on 2024 and everything it has in store. We are looking at the finer details like flights, accommodation and surgery dates which is making it all very real and scary but also a big motivation to keep fighting. Unfortunately we found out that vascular compressions won’t be eligible for HCTP funding which makes the journey a little tougher as it was something we were hopeful for to help cover the costs. Now it means it’s down to fundraising which has been going amazing so far and we are all so grateful for everyone who’s donated. We aren’t there yet but are getting so close. Unfortunately my symptoms are getting worse, so please if you haven’t already share my story around as every little bit counts.

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  • Thank You!!

      23 November 2023
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    Just want to say a huge thank you to everyone for your kind donations! The response has been incredible and we are so so grateful. We're not there yet but it's a massive step in the right direction. This wouldn't be possible without all the support. Thanks again from Alice, Leanne & Jason :)

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