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We are Team Tilly!

  • Update - 12 August

      14 August 2025
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    After 20 days in KK Hospital, Tilly was discharged last night 🥳 Over the past five days her recovery has been quite remarkable – even the doctors have been surprised by how quickly her kidney function has improved. She’ll still need ongoing follow-up and monitoring, but this can be done as an outpatient in Christchurch. Every day she’s a little stronger – it will take time, but we can already see the progress. She’s brave, strong, and determined… a real wee warrior.

    Right now we’re packing up our temporary Singapore life and getting ready to head back to Christchurch, where our family can finally be together again. We couldn’t be prouder of both our girls, but Evie’s strength and resilience through all this has been truly inspiring. We really just can’t wait to see her.

    We’ve had so many lovely messages, and I’ll be doing my best to reply to them in the coming week. Once again, thank you for all the love, thoughts, prayers, and practical support – we feel so lucky to have such an incredible group of people in our corner.

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    • 14/08/2025 by Rachel

      This is such good news. I hope the travel home goes well -you have all done an amazing job.

    • 14/08/2025 by Joanne

      Go Team Tilly. All the very best x

    • 14/08/2025 by SUE

      Fantastic news! Safe travels home and all the best for her continued recovery.

  • Update - 9th August

      12 August 2025
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    A real good news update from us today ☺️

    Over the past 48 hours, Tilly has shown some really encouraging signs of improvement. Yesterday, after 12 days in ICU, we were able to move to a general ward — a huge step forward! Her kidney function is progressing well, and we’re officially free from any fluid and dietary restrictions that we’ve had for the past week or so.

    Yesterday was also a big milestone for removing any remaining tubes and equipment she no longer needed. Tilly prefers to do these things herself, so she removed her own dressings and even pulled out her nasogastric tube herself! She now has just one “just in case” line left in place for access if needed, and we’re hopeful that might be removed in the next day or so.

    Although Tilly is still quite weak and unsteady on her feet, we’re seeing daily improvement in that as well. After 17 days in hospital, we popped her into a wheelchair yesterday and took her outside to feel the sunshine — and to meet the world’s most enormous goldfish!

    The doctors are continuing to monitor her bloods closely to make sure her kidneys are firmly on the road to recovery. She still has some extra fluid on board but that should continue to shift as her kidney function improves. In the meantime, our focus is on gently building up her strength and mobility.

    As I write this, Tilly is sitting up in bed, singing and chatting away — a side of our girl we haven’t seen for weeks. And gosh, it feels so great to have her back 💕 x

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    • 12/08/2025 by SUE

      Wow fantastic news! So good to hear, have been praying for Tilly and all of you. Having had a family member end up in ICU in Thailand, I understand how hard it can be being so far from home, and so much harder when its your child xx I hope she continues to recover and you can come home soon! The medical flight team that arranged everything and flew back with my in-laws were amazing, you'll be in good hands. Sending love and prayers from Wellington.

    • 12/08/2025 by Barbara

      How wonderful to hear that the little Darling is improving so much - be well Tilly 😘🥰

  • Update - 5th August

      5 August 2025
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    Hi all,

    Just a quick update from the past couple of days.

    Tilly remains stable in ICU. There have been ongoing issues with her dialysis circuit, which has caused the machine to stop and start. Over the last 24 hours, she’s been off dialysis while her kidney function is monitored. We're hopeful her body can manage without support, but we’re prepared for her to go back on if needed.

    It’s been a tough few days. It's now been over two weeks since Tilly was up and moving, so she’s stiff, sore, and understandably exhausted. The dialysis has severely restricted her ability to move, so even small tasks are now really challenging. On top of that, she's been spiking high fevers, and tests have revealed she’s currently positive for three viruses—just incredibly unlucky. It really feels like the universe owes this brave kid a break.

    Evie has returned to New Zealand with Eliza and is settling into life as an honorary member of the Webster-Ryall whānau. She’s looking forward to being back at school and reconnecting with her friends. We're doing our best to make this very abnormal situation feel as normal as possible for her, and she’s handling it all so well. If you see her around, a friendly “hi” would mean a lot, but we ask that no questions be directed her way.

    Here in Singapore, we’re doing everything we can to get Tilly home and reunite our family soon.

    Thank you for your continued love and support — it means the world to us xx

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  • Update - 2 August

      2 August 2025
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    Tilly has been stable over the past few days. She's continuing with dialysis, had her 3rd blood transfusion and the team is happy with how things are going on that front.

    She’s now allowed to eat and drink without any restrictions, which she’s absolutely delighted about! Her movement is still quite limited — the dialysis line in the left side of her neck and a lot of lines in her right arm mean she’s restricted in how she can position herself. Despite that, she’s been more and more interactive with us each day. She gets tired quickly but enjoys short spells sitting up in bed doing little activities.

    As the doctors have said before, this remains very much a “wait and see” situation to monitor how her kidneys respond over the coming week. So while we’re not expecting any major changes day to day, I’ll still aim to post an update every couple of days.

    Lastly — and most importantly — we just want to say the biggest thank you. This has been the most frightening and difficult time, but it’s also been deeply humbling. The kindness, support, and generosity we’ve received — in so many different forms — have completely blown us away. We’re especially touched by the donations to Tilly’s page.

    There truly aren’t words to express how grateful we are. Just thank you, from the bottom of our hearts. We are so lucky to have you all in our corner, cheering on our girl. xx

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  • Hot Chocolate has never tasted sooooo good

      31 July 2025
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    After many many many days, Tilly has been allowed to eat and drink.

    She is enjoying her dairy free hot chocolate WITH marshmallows!

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  • Update 3

      31 July 2025

    Hi everyone,

    Yesterday afternoon the team made the decision that Tilly needed dialysis to support her kidney function. Her kidney function wasn’t improving with the measures they were taking, so this was the next step. The dialysis will be continuous, and gradually over the coming days it will remove the excess fluid that Tilly has on board, helping her kidneys and giving them time to recover.

    She was started on dialysis last night and has responded really well to it so far. She has been on a very tight fluid restriction for the past 4 days, but now that she is on dialysis essentially that has been lifted. AND she’s allowed to start slowly introducing food! Tilly’s last proper meal was on Thursday 18th July, so she is understandably pretty happy about that! Her request for her very first ‘meal’ was a Banana and some water 😉

    For now Tilly will remain in ICU being cared for by the amazing staff here and continue to be closely monitored. We don’t expect to see a rapid and dramatic improvement, but for us this feels a more stable position to be in than previous days.

    We are so so proud of her. Her wee body has been through so much over the past 12 days and throughout she has remained strong and brave. She has kept her sweet and caring personality and beautiful manners, and at times has asked the nurses ‘Excuse me, could I please have a tissue for my Mum?’ who was falling apart at the bedside. She is a real courageous wee fighter 💓

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  • Update 2 - 29 July

      31 July 2025

    Tilly has been diagnosed with haemolytic uremic syndrome (HUS).  This is a complication of the initial gut infection.  One of the bacteria (e coli) was a certain subtype that produces a toxin which causes this.  Only a small percentage of patients with this bacteria get HUS. HUS also causes red blood cells to burst (haemolysis).

    There is no specific treatment for HUS, the next few days will involve monitoring her urine output, electrolyte and fluid levels very closely, and treating/supporting her medically with anything required. The doctors are expecting it will take 5-10 days before we can expect to see any improvements.  It is possible that Tilly might need dialysis to support her kidneys in the next few days, the team will be assessing for that on a daily basis.  If needed that would be done here in the ICU and would likely just be for a few days. At the moment we’re just taking things one day at a time.

    The doctors are happy that for now apart from her kidney function her other organs are stable, and they will be closely monitoring this as well. The diarrhoea seems to be settling down and her tummy is not too sore.  She is doing a lot of sleeping, but when she wakes we see her beautiful personality. We are all so proud of how strong she is, and how brave she is being with all the investigations and procedures she is having.

    With Eliza being here, she is able to be a constant for Evie while Mum and Dad take turns being at the Hospital with Tilly.

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  • Update 1

      31 July 2025

    We were coming to the end of an amazing family holiday, when Tilly became unwell in Bintan, Indonesia. What started as a gastro type presentation soon escalated to her becoming very ill. We travelled to Singapore on Wednesday where she has been admitted to KK Hospital since.

    Essentially she has a very severe infection through her intestines, and as a result there have been a number of complications that have presented themselves. She has a kidney injury, and her wee body is having trouble balancing fluid and all the necessary components that go with that.

    As of this morning, she is in ICU and she is very unwell. Singapore has a world class medical system and she is receiving the very best of care from an amazing team of Doctors and Nurses - we are so grateful for this.

    We have no words to explain how thankful we are to Eliza, who has left her home and whānau, to fly to Singapore and support our wee whānau and help with the juggle here, while we focus on Tilly.

    We’re not precious about who receives this information, so please do distribute/add people to the group as you see fit. We need your thoughts, prayers, positive vibes and love - everything you can send our way.

    With love from The Hendley’s

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