Just another BIG Thank you 🙏🏻 to absolutely everyone who helped us to get Jemima to 17 years old with the surgery in Germany! 🇩🇪
To mark the one year anniversary of her surgery Jemima was invited to speak on The Breakfast Show on TVNZ about her journey, (you can watch it on her fb page). She was straight to the point about how sick she was back then and how much better she is now and how thankful she is she was lucky enough to get the surgery done, while also acknowledging the ongoing chronic health condition Ehlers Danlos Syndrome that caused the AVCs that she had surgery for.
She is back at school, socialising with friends, doing all her crafts and hobbies, learning to drive (😱) and still working hard at rehab. And, despite some recent EDS issues with pain and gastrointestinal issues that put her in hospital for 3 nights and have really been giving her grief - she is not the same child you helped get to surgery in Germany 🇩🇪 Thank you everyone for your ongoing care and support - Rachel 🧡🧡🧡🧡
Attached is a video of Jemima and a friend Tyler speaking about EDS on a documentary.
She did it!!! 🧡 12 months to the day since this first photo with her dance buddy taken when she was in hospital for 6 months, fed by TPN straight to her veins, far too sick to dance due to severe nausea, abdominal pain, inability to eat and loss of feeling in her legs. A diagnosis of hEDS hypermobile Ehler Danlos syndrome causing AVCs multiple abdominal vascular compression syndromes. We are now 6 months post decompression surgery in Germany and grit, sweat and tears of intense rehabilitation to get her eating and drinking and walking and now dancing and she’s back on the stage despite a last ditch attempt to destroy her leg 🫣! Thank you so much to everyone who has supported Jemima, the fundraising, the love and the kindness! We can’t thank you enough for being behind us 🧡🧡🧡🧡
🧡🧡Today is a year since we went to the hospital ED because Jemimas symptoms were too bad to handle any longer at home. Her facial swelling and rashes meant that she had no “safe” clothing or foods. She had huge bloating every time she tried to eat and was experiencing severe pain and nausea that wasn’t going away. She was admitted and didn’t get discharged until Feb 2022 and that was followed by multiple readmissions before we flew to Germany at Easter 2023 for surgery for Abdominal vascular compression syndromes (AVCs) caused by hypermobile Ehlers danlos syndrome (hEDS). 🧡🧡
Before surgery: the situation is life threatening - she’s experiencing severe pain, nausea and vomiting. She loses feeling in her legs due to blood from the compression’s pooling in her spine so is in a wheelchair or bed bound and is constantly at risk of sepsis and organ damage from TPN
After surgery: Jemima requires no medical feeding interventions, feeling is restored to her legs and pain and nausea after less than 5 months is already reduced from 10/10 to 4/10. Already she’s returned to her schooling and manages an hour or two every day and she has started exercising again with a post surgery physiotherapist who is knowledgeable in ehlers danlos syndrome. She’s able to hang out with friends again, cook and eat and live a life “similar” to her friends. It’s a long path to recovery but we are so far away from where we were a year ago!
We are continuing to grow awareness! 🧡🧡🧡🧡
So grateful for the opportunity to visit the farmers market today together for hot chocolate and crepes 😋, to walk this adorable borrowed dog Shelby who came for a sleepover with Jemima this weekend! Enjoy some delicious ginger crunch and a meal of rice, beans and salad jemima made and to watch Jemima and her friend running up and down the stairs with Shelby the dog arguing about what music they were listening to while baking!!
Worlds away from 4 months ago!
Recovery is going well, Jemima has a lot of grit and determination, she always has done since she was a toddler and we generally try to focus on the positives as a family. But I don’t want to imply that it’s not an incredibly gruelling and challenging process recovering from surgery. Initially Jemima could barely stand as her back struggled to do the work of her abs also. Now with weekly rehab physio and an incredible masseuse and EDS chiro she’s able to attend school 1-2 periods every day, walk around the block, eat and drink small meals 🥘 and enjoy some of her hobbies like flute 🪈 and dancing 💃 again.
Pain, nausea, bloating are certainly still issues but not at all completely debilitating for her as before, she’s able to push through for the most part with less and less days in bed! I am so proud of how much effort she’s making towards her rehab, the daily exercise, all the many supplements she takes and treatments she does to ensure that she has the best opportunity for recovery possible.
THANK YOU SO MUCH 🧡
An update for all of our incredible supporters. Jemima was interviewed by reporter Jonah Frank and her story is in The Waikato times and The Wellington Post today. Both stories are similar. Beautiful video too of my incredibly eloquent and talented daughter speaking up to raise awareness for others who might be suffering and searching for answers!
Unusual comments from Te Whatu Ora in the articles regarding her surgery. It’s well established by all her specialists that her multiple abdominal vascular compressions were caused by hypermobile ehlers danlos syndrome and that’s exactly what the diagnosis states and what surgery was for that they accepted and contributed HCTP funding towards. I do hope Te Whatu Ora will reach out to us or our specialist doctors to discuss this further and watch Jemima’s video where she shares about how abdominal vascular compression syndromes are caused by ehlers danlos syndrome or lax connective tissue disorders!
I have been having some discussions with a friend of mine re EDS. You may well be aware of them but two people she notes with an interest in this matter are:
Patrick Yap Paediatrician and Clinical Geneticist is the expert here in Auckland when it comes to EDS, but as we discussed, as far as hypermobile EDS is concerned, there are multiple genes involved
Mr Helge Koeck - Neurosurgeon
PRIVATE SERVICE, NEUROSURGERY, Wellington
He is also a vascular surgeon and may be familiar with operating on some of the EDS issues. I saw the C1 C2 instability mentioned, which is an EDS problem.
Kind regards, Ethel du Plessis
From the bottom of our hearts thank you all for helping us get Jemima to Germany for the life saving abdominal surgery to decompress multiple severe abdominal compression syndrome’s that was unavailable to her in New Zealand. She is now safely home again!
The surgery was as successful as we could ever have possibly hoped for and she is now hugely improved and best of all off all the intravenous feeding that was required prior to surgery to keep her alive but that at the same time was causing life threatening risks and complications. As Jemima says; she can’t describe the relief that she can go to sleep without severe pain and nausea keeping her awake all night and without the fear of developing sepsis again. This has been life changing for her and despite the long road to recovery and catching up on all she missed out on during the months she was in bed, she now feels hopeful about her future for the first time since her 15th birthday party when she was hospitalised for close to 200 days prior to going to Germany.
The reason for this message is that we are pleased to let you know that Te Whatu Ora has finally agreed that Jemima’s situation meets the criteria to receive assistance with funding from the high cost treatment pool and they have made a payment of funding directly to the hospital where the surgery took place.
This acknowledgment by the HCTP of recognition of her diagnosis of abdominal vascular compression syndrome’s is very important, not just for Jemima but for others who wish to follow in her footsteps and apply like us before travel for funding to go to Germany for surgery for abdominal vascular compression syndromes. There has been an immense amount of stress and work to achieve this outcome. We are so grateful to all the people on our team who have lobbied the HCTP alongside me for this recognition that: 1. She has a diagnosis of multiple severe abdominal vascular compressions responsible for her severe symptoms despite the continued refusal of Drs to acknowledge 2. She requires intensive testing and surgical treatment not available in New Zealand and 3. That she meets the HCTP criteria for funding towards overseas treatment.
We are so grateful that we have received any funding as it has been an extremely stressful and distressing process to negotiate and for a very long time it appeared extremely unlikely any funds would be forthcoming. For transparency - the HCTP generally covers all or most costs associated with overseas travel for medical treatment BUT in our case the HCTP have been very clear that the one payment made to the hospital is the only and final funding Jemima will receive, there are no further fund’s forthcoming retrospectively towards our overseas treatment costs such as testing costs, travel, accommodation etc. We remain grateful for what we have received and for the recognition of both her diagnosis and her need to travel for surgery.
The contribution from the HCTP means that combined with the money fundraised we are relieved and thrilled we can now cover the costs specified in the givealittle related to overseas treatment and her care, rehabilitation and recovery at home. This includes any further costs for abdominal vascular compressions, things picked up in testing that require long term management in nz and of her underlying medical condition that causes these compressions - hyper mobile Ehlers Danlos syndrome.
Jemima and I are very committed to helping grow awareness regarding this life threatening condition and as previously stated, any excess funds left over will be used to help other Kiwis with similar conditions.
Jemima and I cannot thank you all enough for giving her this opportunity via Germany to leave behind the New Zealand hospital bed, her medical feeding and her wheelchair and begin her long rehabilitation and recovery back to life as she knew it. We know this won’t be a fast process, it will take a long time to heal from the surgery and regain stamina and strength again, the Professor said recovery from surgery is slow and she will always experience some health effects from the EDS. The experience in hospital in New Zealand and the way she was continually told the pain and nausea were “in her head” and that it was not abdominal vascular compression syndromes will take a long time to recover from also.
If you have any questions about this post or any of the other information I’ve shared about hEDS or AVCS please reach out to me directly.
Thank you,
Rachel and Jemima xx
Hello Rachel & Jemima
I’ve been following your journey from Christchurch. I first read about Jemima when one of your many friends and supporters shared the givealittle appeal on facebook.
I can’t imagine what it has been like for you and your family, but I just wanted to say how very happy I am that you have had the best possible outcome.
I wish you only the best for the future and that you continue to heal and get better in the fasted possible way.
Your updates were great and you have touched so many lives even of people who don’t even know you - like me.
I just wanted to wish you well!
🧡 Kiki :)
This made me cry, tears of joy, such good news… great work team and welcome home 🥰
This is such wonderful news! So good for you, and all those following in your footsteps! Sarah & Lucy xxx
This is great news!
Have you been in contact with Rare Disorders NZ? https://www.raredisorders.org.nz/
There is exactly 1 month difference between these photos! Photo 1 - day of admission to Bel Etage 17/4/23 and photo 2 - the day we went back to say our final goodbye to Professor Sandmann 17/5/23. Photo 1 On the admission day I was trying to figure out just how I was going to get Jemima from the hotel down the street to the clinic as her nausea and pain was particularly severe that morning!! She was unable to walk and had to use a wheelchair and was clutching a heat pack and a vomit bag. The black bag to her right is providing her with nutrition directly into her veins and the little bag alongside it is her feed running into her nose to her intestines. VS Photo 2 - today where she stopped for a speciality cinnamon bun on our walk through town into the clinic to farewell the surgeon who has given her back the opportunity to walk and eat again.
Now, I definitely can’t say that she is better yet! Far from it, she is still recovering and has a long way to go, she is still experiencing some pain and nausea and she can still only walk a few blocks on her own. But..the outlook is very positive given the progress she makes every day!! This is one determined kid!Thank goodness we took this leap of faith and flew to Germany or I have no doubt that after 9 months in New Zealand looking like photo 1 if we hadn’t come to Germany then today’s collage would just be 2 photos of Jemima lying in bed with feeding tubes. Compared with where we were at just a month ago we couldn’t wish for anything more than the comparison below 🧡🧡🧡🧡
- Rachel x
Thank you so much for the updates. It has been a privilege to watch her journey. I'm thrilled you are home, that everything went well, and you have had some help from the Health Department. It is horrific how Jemima and many others are treated with diseases such as EDS and while I'm so sorry you have been through this, your experience won't be in vain if you can help others. All the best for your recovery Jemima. There's no hurry - you have so much to look forward to ahead of you! ❤️
It has been just 3 weeks since the surgery and Jemima has now been discharged from the hospital for 6 days. Her pain from the surgery is still very present and difficult to manage at times, she still has a little nausea and she gets very fatigued quickly. However….as of last Thursday Jemima has had all the tubes removed from her body!!!!!!!! She no longer requires feeding via nose or veins! Why? Because Jemima no longer needs medical intervention to eat - thanks to the surgery she is able to eat and drink enough to sustain herself and that amount is growing everyday!! She’s also able to walk small distances without her wheelchair and these distances are also increasing! We are currently staying in an apartment in Düsseldorf and she is only returning to see Professor Sandmann for check ups every week! Most of the day she is resting in the apartment but she has enjoyed in the past week; going to a cafe and actually ordering a drink not just watching me, going to look around the shops, going to an art museum, going to a pizza restaurant and a few trips to the parks nearby. Next week she will have the last of her stitches removed and in 2 weeks time we expect her to be strong enough to return to New Zealand!! Eating, drinking and walking! 3 things that she couldn’t do just 3 weeks ago!!!
That's wonderful to hear Rachel, must be such a good feeling being able to eat again, and glad the pain is subsiding and Jemima is getting stronger each day. Keep up the good work! xx Ness
My niece is going in for major back surgery Monday week with a 6 month recovery time. She will have a lot of pain too. Jemima is such an inspiration! What a trooper. Do you have any tips on what is useful for teenagers in hospital, and also for recovery time at home? And also for support for the parents? It's lovely to see Jemima smiling and able to enjoy the small things in life again. You have been amazing support to her Rachel - what a wonderful mum you are.
So so happy for Jemimia and can't imagine the mixed emotion's of relief, joy, gratitude and frustration you must all be feeling right now.
Safe travels home...
Fantastic progress!
Thank you for sharing the updates with us. I am so thrilled that the operation has gone so well. Enjoy all the ice cream, sushi and walking Jemima! ❤️
Sorry to spam you all with posts but this is too good not to share! Today suddenly after 3 very rough days and nights in pain Jemima woke up feeling a bit better and after lunch she felt well enough to ask if we can walk to get icecream!!
In the icecream shop we were surprised by Professor Sandmann her surgeon! He had spotted her when he was in the barbers and came to find her so of course we had to buy him an ice cream too! We took the wheelchair for a walk with us but she was able to walk a lot herself before she needed it!
When we got back to the hospital Dr Sandmann had beaten us and he had bragged to everyone that Jemima bought an icecream just for him! Apparently we heard he then gave a lecture later that day and he started it with the story of Jemima buying him an icecream and our amazing anaesthetist Dr Al-Khayat had to interject with the point to the story! Just 17 days ago when Jemima was admitted by them she couldn’t eat or drink or walk well as her legs were so shaky so she was forced to use a wheelchair. Just 14 days after surgery she WALKED to the icecream shop to EAT an icecream 🍦🧡🍦🧡🍦🧡🍦🧡🍦
May she continue feeling better with every coming day.
Thank you so much for helping get us here! We owe you all an ice-cream with Jemima!
What fantastic progress!
Hi Jemima and mum. I don't know you but I have been lucky to be on this journey with you through your updates and stories. My mother-heart was struck by your story and I'm so glad you have had success. It was all worth it! Please keep sharing these wonderful stories. Professor Sandmann seems AMAZING and he must be so proud of Jemima. I love this ice cream story! How do you say thank you to someone who has offered so much? Ice cream seems a fitting Kiwi way to start and of course he won't expect more than that. Her progress will be what warms his heart.
Jemima is absolutely glowing and we are so pleased, to see her looking so well and to see Professor Sandmann too. well done. keep it up. can't wait to see you home. Clarence Street Team
Professor Sandmann removed the stitches today. A very painful process after which he said “it’s ok today you don’t like me, but soon we will dance!” The NJ tube is gone - no longer needed! What a relief! The epidural remains in for pain relief and TPN and fluids are still up but not for much longer as she’s managing to eat and drink small amounts at meal times. Meal requests have been porridge, a cheese toastie, chocolate milk, sushi and dumplings. So far I haven’t found sushi or dumplings so we will make it our mission after discharge. For dinner tonight Jemima has ordered a tomato and mozzarella salad! Jemima has walked out to sit in the garden a few times. The weather here has been sunny with a chill still. Today I have added a picture of what a nutcracker compression looks like. When Dr Scholbach scanned her he found this compression in Jemima to be severe resulting in significant loss of blood flow to her kidneys. This was made even worse for the right kidney every time she ate as the movement of the food caused an additional compression on her left renal vein by the filling duodenum. Other common symptoms of nutcracker are abdominal pain, headaches and back pain. Dr Scholbach says that we should not have been told in NZ that Jemima doesn’t have a nutcracker compression (despite it being evident on her scans) because she doesn’t have haematuria (blood in the urine) In his practice of scanning many many hundreds of young patients he says that it is his experience that haematuria is rarely seen in young people with multiple compressions and debilitating abdomen, back and headache or migraine pain are most often the symptoms he sees. Jemima suffered prior to treatment with almost daily headaches and occasional migraines and she has not had one since the surgery. Thanks everyone for all your well wishes xx
The last few days have been up and down with pain, nausea, swelling and fever. Staying on top of the pain from surgery has been difficult and there have been some problems with the position of the epidural that meant it didn’t work well which meant her pain from the surgery was so severe she couldn’t get any rest. They have done some adjustments and it’s still not perfect but it’s much better! The physio comes every day and he’s so nice and kind that Jemima gets up without complaining and walks for him even though it’s so painful. She’s made two meal requests so far- kiwifruit and yogurt and McDonalds fries but has failed to make much of a dent in either. Professor Sandmann says every day “slowly slowly with the food”. Sadly, the phrases I learned for school cert German with Frau Grimm of “Excuse me, is there smoking in this train carriage?” and “Oh no! The sponge is not wet!” have not yet come in handy on our trip but there is still time!! I include 2 photos about Median arcurate ligament syndrome (MALS). This is just one of the compressions that Jemima had fixed but I thought it might be interesting show you all why she was not able to eat or drink without severe pain. Thanks for all the messages for Jemima keeping her spirits up and shrinking her homesickness! She really appreciates them 🧡🧡🧡🧡 - Rachel
Wow, it's so great that Jemima can eat a little now! The pain sounds terrible but she seems so brave handling it. I hope you get to use your German soon :)
The Doctors warned us it would be worse before it gets better and they weren’t kidding. Today has been rough, Jemima started having fevers and has some fluid retention in her limbs and tummy. The doctors say this is normal response to such a huge operation. Her pain is hard to manage and she still has bad nausea! On day 2 she was tasked with trying to sit up for the first time by the physiotherapist and to drink some tea by Professor Sandmann! Jemima and I are still exclaiming everytime she has a drink after so long without being able to take any fluid by herself orally because of severe pain, nausea and bloating. 🧡🧡🧡🧡
Jemima had her surgery today!! It was a very long surgery she was in the operating theatre or recovery room from 7am-7pm. Professor Sandmann reports that everything went well and he did everything he wanted to do. She had a much better time with the anaesthetic than the last few times in NZ thankfully except for some pretty bad vomiting when she woke up. She has some very strong painkillers at the moment to help her and drugs to stop her vomiting and we have been told that the next days and weeks and months are going to be very challenging both physically and mentally for her. Thank you so much to everyone who helped us get Jemima over here 🧡🧡🧡🧡 - Rachel
well done Jemima, we are so proud of you and knew you could do it. Rachel take care of yourself now too. The Team at Clarence Street.
God bless you, darling. Get well soon 🙏❤️...!
So happy for you Jemima. We have loved the updates about your travels and so broken hearted how challenging it was. You are so tough and inspiring. We can’t wait to see you back at dance again and pain free. Michelle and Isla xx
I’m writing this from Germany 🇩🇪! Jemima is fast asleep in our little hotel room next to the train station! We have managed to get appointments with both the German specialists for the coming weeks! Jemima has made it through over 30 hours of flights and waiting at airports to get to Germany to see these two highly sought after and highly specialised Doctors. The trip was pretty rough for her but she was an excellent trouper despite the flight triggering severe pain and nausea (and showed remarkable skill in using the airplane sick bags 😬). We managed to find a quiet corner in Singapore to get out all the equipment for her to start up her TPN feeds and do all her meds. Along with our own belongings we had to carry an additional 36 kgs of medical feed liquid and equipment some of which is in 2 backpacks with tubes attached to her body and cannot be disconnected for security clearance! It was certainly eventful having 15 litres of liquid in our carryon bags especially in Singapore where our paperwork and bags were very throughly examined. The wheelchair assistance we received from all the airports we visited yesterday in Auckland, Singapore, Frankfurt and then Leipzig was phenomenal. Every single person went out of their way to make sure Jemima was as comfortable as she could be. We came straight to rest in our hotel and prepare for the next step which is going to be visiting the first Dr for some very complex and painful testing. We could never have got this far in our journey to save Jemimas life without everyone of you and your support and love for Jemima and for me too. Thank you so much xxx Rachel
Thank you so much for the update Rachel. Yahoo you are both safely in Germany. What a huge test of resilience the trip was, on top of everything. Gold medals for the two of you. A big hurdle overcome. Lots of love from us both for the next stage xx 🧡🧡
Well done. You both have my utmost admiration. Ethel du Plessis
Jemima is home again! After 180 days in hospital away from her siblings. We are so happy to have her home again! I will be looking after her at home until we fly! The plan now is to keep her as well as possible for her to endure a long flight to Germany next month and undergo some very painful tests and surgery.
We are so grateful to you all for every single donation and word of encouragement to Jemima. She reads every single message.
Please can we ask a favour of you. If you haven’t already done so, please please can we ask you to share Jemimas givealittle page on social media. We are so close to getting her to Germany and getting her this life saving treatment 🇩🇪
Thank you all. Rachel xx
Jemima and I are excited to let you all know we are booked to head to Germany in April after Easter. It’s been another rough few weeks with another infection landing her in hospital again with sepsis and she needs to go to Germany as soon as possible! Hopefully she’ll be discharged early next week and will then stay infection free until we fly 🇩🇪✈️.🙏🏻
As before, we are both so grateful for every donation both big and small that is supporting Jemima to get to Germany and get this treatment she desperately needs to relieve her pain and be able to eat and drink again. Here is a lovely photo of Jemima at her dance school fundraiser last weekend. X Rachel 🧡🧡🧡🧡
Wonderful news to hear you are booked to go to Germany Jemima and Rachel. Pray that all goes well leading up to the flight and the flight over. Lots of loving, healing thoughts are with you all. Not long to wait now. Love from us both xx
Thank you so much to everyone who helped the givealittle grow so much! We are so grateful. We are absolutely determined to get Jemima to Germany as soon as possible even more so after the past week.
An update of what’s been happening:
Jemima and I have been trained to do all her medical needs, medications and feeds at home so we are working towards discharge home and trying to keep her as healthy as strong as possible for flying around the world!
Unfortunately Jemima had a set back last week when we found her central line into her heart was being compressed between her collar bone and rib despite this one having only been in for 10 days. This meant that Jemima had to have surgery for a new line as soon as possible and while she waited she had to have peripheral iv line’s inserted to keep her hydrated as she can’t eat or drink. Unfortunately these lines are not easy to get in or to keep in for Jemima. The ehlers danlos syndrome means that her veins are extremely difficult so she had a lot of drs attempting to insert ivs but not many were successful and even when they were they barely lasted. It’s a testament to Jemima’s bravery and courage that she was able to get through this as it was extremely painful and stressful and both arms are covered with bruises. The great news is the central line surgery was successful and she has a new functional central line that she can receive her nutrition through. Unfortunately she experienced a small airway collapse with the drugs used with the surgery so she’s been on oxygen ever since. Today we hope she will ween off!
Next update hopefully she’ll be at home with her little sister and brother and I! 🧡🧡🧡🧡
- Rachel x
We are just so grateful for all the donations and messages and sharing of the give a little and fundraising from people all over the globe pulling together to get Jemima to Germany.
Jemima has been recovering from an infection in her central line and surgery to get a new line placed so we are a little behind in our thank you messages but we are so appreciative to everyone! Her spirits have been so lifted by all this love and she has hope for the future! We also got to meet another kiwi girl Taylor Doyle this week. Taylor has been to Germany for surgery already and is doing so well now! We can’t wait for Jemima to feel better and eat again like Taylor!!!! 🧡🧡🧡🧡
Thank you so much from the bottom of our hearts everyone who has donated and shared for Jemima. Thank you to everyone who has reached out for updates. We have made a Facebook page for people to follow if they want: https://www.facebook.com/pg/Jemimas-Stomach-Hurts-100991362918289/community/
Hello, Rachel, Jemima and family all the best with the lines behaving and staying out. You have such courage and bravery Jemima, you are another day closer to being well again. We are hoping today you will be feeling more comfortable than you have been. All our healing thoughts are with you. Love to all Elizabeth and Trevor xx❤️
Hi Jemima and family, it has been a real privilege to follow your journey and I am really excited for you to now be in Germany, you are such a brave girl Jemima, you have endured so much already, just keep smiling that beautiful smile of yours, lots of love, Lise
