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Please help Julia eat and drink again!

  • Julia update

      7 November 2024
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    Julia is getting better and better. She is of course still resting a lot but also has been out and about a bit and enjoyed some sightseeing. Every day I am amazed how much better Julia is than before her surgery, even though she is still only at the start of her recovery.

    Yesterday we were back in Leipzig for post op ultrasound scans to see how exactly Julia’s blood flow has changed since the operation. As Julia’s symptoms had improved so much, we were not surprised that it was confirmed that the surgery was a success. The grafts that were placed around her compressed blood vessels are working well.

    It was especially nice to see how genuinely happy Prof. Scholbach was to see Julia feeling so much better. This was the same with Julia’s surgeon in Düsseldorf, Prof. Sandmann, who took time out of his very busy schedule to celebrate with us how well Julia was doing over ice cream the day she was discharged.

    We feel so lucky and grateful that Julia was helped by these two (and other) not only amazingly skilled but also genuinely compassionate doctors over here. We could not have wished for better care for her.

    Thank you all so much for helping to make this possible for Julia and for taking the time to read our updates to find out how Julia is doing.

      6 comments  |  Login to leave a comment

    • 07/11/2024 by Joel

      Well done Julia! Keep getting better and live your life to the full.

    • 07/11/2024 by Zoe-Anne

      I love reading these updates and hearing Julia's progress. Wishing you all a wonderful Xmas. <3

    • 08/11/2024 by Helen

      So great to see you smiling Julia, and to know how successful your treatment has been. And that you have been treated by such passionate and compassionate doctors. I'm looking forward to the next update. Kia kaha. Helen

    • 08/11/2024 by Jennifer

      What a wonderful update - thank you so much for sharing, Babette.

    • 09/11/2024 by Abby

      This was such a wonderful update to read! I'm so happy for Julia and for the whole family.

    • 19/11/2024 by Robby

      Over the moon to see you sitting in a cafe with food & what looks like a hot cocoa. How enjoyable must that all taste. Wishing you a great trip back to Auckland sometime very soon I hope. Home for Xmas. What joy for everyone. Take care, & wishing you & your mum a safe trip home. Love Robby

  • Julia update

      13 October 2024
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    Julia is now 11 days post op and is recovering well, considering what a massive operation she has had such a short time ago. She is continuing to enjoy trying different foods - German cheesecake (which is very different from cheesecake in other countries) is a new favourite. She is also able now to go for short walks around the little hospital garden. It’s lovely to get a bit of fresh air and sunshine.

    The doctors and nurses are very sweet, cheering her on for every bit of progress she makes. The care Julia is getting here is excellent.

    Julia had a CT on Thursday which confirmed that the operation has successfully restored her blood flow to all the right places. We thought so because her symptoms are all so much better, but it was great to see it in the scan.

    Thank you all for thinking of Julia as she is recovering. Have a nice weekend!

    Babette

    (The photo was taken from the park opposite the hospital. It’s beautiful here.)

      4 comments  |  Login to leave a comment

    • 13/10/2024 by Susan

      That is so wonderful to hear, I'm so glad she's on the mend and sounds like she's in great hands and has beautiful surroundings to recuperate. All the very best with your recovery Julia, each day you get behind you is another step forward 🥰

    • 13/10/2024 by Helen

      Such good news Julia and so much progress in such a short time. Enjoy lots of cheesecake!

      Nga mihi nui. Helen

    • 13/10/2024 by Robby

      All positive news & so encouraging that Julia is able to eat a little food..

      I hope you both get to relax a little & enjoy some stress free time together. Cheers Robby

    • 14/10/2024 by Olivia

      This is amazing to hear, so glad for Julia to enjoy food and life again 🌸🌷

  • Day 3 post-op

      5 October 2024

    Julia is doing really well, considering she had such a massive operation only three days ago. Today she even walked a few metres around her room, with the help of the physiotherapist, and she continues to enjoy some water, juice and flat lemonade, the occasional ice block and tonight a few spoons of veggie broth (which she particularly liked, as she was craving something salty). The care from the doctors and nurses here is amazing.

    Thank you all for your support and the many lovely messages!

      3 comments  |  Login to leave a comment

    • 06/10/2024 by Zoe-Anne

      That's wonderful news to hear she's recovering well, and not only that, she's starting to eat and drink again! Best wishes to you all x

    • 06/10/2024 by Bridget Horder

      Yay whoop whoop 💪💪💪💯❤️😊

    • 07/10/2024 by Robby

      Awesome to hear Julia keeps going from strength to strength after her huge operation.

      That veggie broth must have tasted sooooo good. Thoughts & prayers are with you both. Cheers Robby

  • Julia's surgery

      2 October 2024

    Julia is out of surgery! It was a very, very long day – they got her at 7 am and I only saw her again at around 5.30 pm in the recovery room (those 10 ½ hours seemed like 10 ½ years to me!) – but the surgery went well. Julia even has been able to drink some water and eat a small ice block tonight, without pain or vomiting! This is amazing as she hadn’t been able to do either for a year. We are so excited, and the doctors and nurses are very happy for her.

    Julia still has a lot of tubes and is exhausted, so no photo today. The anaesthesiologist and nurses are doing a great job staying on top of the pain.

      3 comments  |  Login to leave a comment

    • 02/10/2024 by Helen

      So,so pleased to have such good news. Please know that I am hoping that Julia is recovering well and that she will soon be able to eat as the rest of us do. I send my very best thoughts and wishes to you both and look forward to further updates. Kia kaha. Helen

    • 02/10/2024 by Robby

      Hallelujah what wonderful news. Wishing strength to mum as well as Julia. Love Robby

    • 02/10/2024 by Bridget Horder

      Awesome all the very best to you 💪💪💪💯❤️😊

  • Düsseldorf

      1 October 2024
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    We are in Düsseldorf now! Unfortunately, Julia vomited up her NJ tube during the train ride here yesterday - very unpleasant and bad timing so shortly before her operation, but they gave her IV fluids when they admitted her today to keep her hydrated.

    We had long conversations with the surgeon and the anaesthesiologist, which we found very helpful, and met a lovely Swedish girl who had the same operation two weeks ago. It was good to talk with her and her dad.

    Now we'll try to get some sleep before the big day tomorrow.

    Thank you all so much for helping to make this possible for Julia.

      3 comments  |  Login to leave a comment

    • 01/10/2024 by Jennifer

      Thanks for the wonderful updates, Babette. Thinking of you both - Kia kaha and aroha for tomorrow 💗 Jen Ioannou

    • 01/10/2024 by Zoe-Anne

      Thank you for continuing to keep us updated. I hope everything goes smoothly tomorrow and Julia is soon back up on her feet, and more importantly, she regains her quality of life.

      Best wishes from back here in NZ <3

    • 01/10/2024 by Robby

      Hi Julia. All our thoughts, best wishes & prayer are with you tomorrow. We look forward to a post op update as you start your journey to recovery. How exciting, so glad you were able to take encouragement from someone who has been down the road you are travelling.

      Much love to you, your mum & family. Robby

  • New scans

      22 September 2024
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    Julia and I just came back from Leipzig where she had ultrasound scans with a radiologist/paediatrician, who is an expert on Ehlers-Danlos Syndrome and abdominal vascular compressions and uses technology which is not available in New Zealand. He works closely with Julia’s vascular surgeon.

    Unfortunately, we received much bad news. Julia’s compressions are much worse than could be diagnosed from the lower quality scans she previously had done in New Zealand, and the specialist found another massive compression (in addition to the four we already knew about) and a few other things. This was tough to hear but we are glad to know what is really going on with Julia and why she has such extremely severe symptoms. The radiologist was incredibly compassionate and knowledgeable and spent an hour longer than planned for the appointment with Julia, checking and re-checking everything carefully and talking us through each issue as he went along. It was good to be really listened to and being treated with such empathy.

    The weather was lovely, and Julia was well enough for a stroll through the beautiful old town of Leipzig and a visit to the famous zoo, which we both really enjoyed.

    Now we are back in Berlin, taking a bit of time to get over what we have learned from the scans in Leipzig, until we go to Düsseldorf for Julia’s operation.

    Thank you all, again, for all your support without which we would not have been able to get Julia properly scanned here in Germany.

    Babette and Julia

      1 comment  |  Login to leave a comment

    • 22/09/2024 by Liv

      sending all my love 💜

  • We are in Germany!

      16 September 2024
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    We are in Germany now!

    The long flight was extremely tiring for Julia and getting her feeding pump through security in various airports was quite an adventure, but now she can rest up for a few days before we take the train to Leipzig for her scans.

    The photo shows Julia in front of a huge pile of Rittersport chocolate bars, dreaming of all the chocolate she will hopefully be able to eat again soon.

    Thank you all again for your amazing generosity without which we would not be in Germany now to get treatment for Julia. We really can't thank you all enough for your help.

      2 comments  |  Login to leave a comment

    • 16/09/2024 by Helen

      Wonderful to see the photo and know that Julia is so close to having the op. Kia kaha to you all. Helen

    • 16/09/2024 by Bridget Horder

      Awesome 🤩

  • Thank you!

      5 September 2024

    Thank you all so much for all your lovely messages and generous donations for Julia's operation. Just one more week until we are flying to Germany! We feel so lucky that we are getting the chance to seek help for Julia overseas, which would not have been possible without all your support.

    A special thank you to Georgia and her friends at Chilton Saint James School, who recently organised a bake sale which raised $104 in support of Julia. Thank you, Georgia and Chilton! We so appreciate your support.

    Babette, Bill and Julia

      1 comment  |  Login to leave a comment

    • 16/09/2024 by Robby

      Wow. You’re in Germany. Fantastic. You have so much to look forward to now thoughts & prayers are with you love Robby

  • School fundraiser and surgery date

      2 August 2024
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    Thank you so much, all of you, for your amazing support to Julia, which means so much to us. We love all your messages of support and read them all.

    We have been able to lower the fundraising goal because Julia's school, Queen Margaret College, had a huge fundraiser for her (even with its own Motto and beautiful Logo which I have attached below!). They raised an unbelievable $ 31.506, 97!

    The fundraiser looked like a day of great fun and the fundraising means so much to Julia and our family as it shows her that, even though she has been away from school for 16 month now, her friends and teachers have not forgotten her and are all behind her. Julia can't wait to go back to school, and we have high hopes for that to happen next year, as we now, because of all your generous donations, have been able to book in a surgery date for her in Germany in early October!

    Thank you all so much!

      3 comments  |  Login to leave a comment

    • 02/08/2024 by Zoe-Anne

      That's absolutely wonderful news! I wish your daughter all the very best. What a wonderful early Xmas present!! <3

    • 02/08/2024 by Jennifer

      This is such amazing news! I have loved reading about the QM community’s generous spirit and raising that phenomenal amount. All the very best for Julia’s surgery in October and we look forward to seeing her return to school soon and be healthy again. Take care and all the best, Jen xx

    • 02/08/2024 by Robby

      That’s just totally the best news.

      What an incredible fundraiser the school achieved. Must make you feel loved & cared for which you so deserve. All the very best wishes for your trip to Germany & for your operation. You have much to look forward to now.

      You have been in my prayers daily & will continue to be so. Lots of love, the future now looks very bright for you. Robby

  • Thank you and another article

      15 July 2024

    Thank you so much for all your incredibly generous donations and very kind messages, encouragement and good wishes! We are completely blown away with how many people want to help Julia and amazed that such a large sum has already been donated in so short a time. Thank you all for your incredible generosity. We have had donations from Australasia and as far as Europe, North America and Asia. We are really touched by all the support.

    We love reading all your lovely messages, which show Julia that she is not alone in this.

    There is another article on the issue on RNZ news today, featuring Julia and another young woman, Alice, who already had the operation in Germany:

    https://www.rnz.co.nz/news/national/522129/abdominal-vascular-compressions-syndromes-sufferers-left-fund-raising-for-their-own-surgery

    Hopefully, this will help raise more awareness for abdominal vascular compressions and what these young patients have to go through.

    Thank you all so much for your support! We hope you are all enjoying the school holidays – winter down here, summer in the Northern hemisphere!

    Babette, Bill and Julia

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