Please see previous post for details of our incredible success story! We want to thank every single person who donated to make this miracle possible xxx
We are completely overwhelmed with gratitude for every single person who has supported Amelia on this journey. Thanks to your kindness, generosity and love, we were able to reach our goal and give Amelia the chance she so desperately needed.
Because of you, she has had the surgery, is on the road to recovery, and we are so excited to be bringing her home soon. None of this would have been possible without the incredible community who stood behind us, donated, shared, fundraised and kept us going through the hardest days.
As we have reached our goal, we will now be closing the Givealittle page. Please know from the bottom of our hearts how thankful we are – you have given our girl hope, healing, and a future.
Love from Joe, Maddy, Amelia, Lachlan & Harry❤️
The past few weeks have brought highs and lows. We’re still in hospital after Amelia developed sepsis in her CV line (on discharge day no less), but she’s finishing antibiotics today and doing much better. Low blood pressure remains a challenge, but it’s improving as she weans off medications.
Despite setbacks, her progress has exceeded anything we dreamed possible. When we chose Germany, our only hope was that she could tolerate stomach feeds without pain. We didn’t know if her swallowing would return, if she’d walk again, or if her paralysis would improve – all we wanted was to get her off TPN, out of constant pain, and keep her gut working.
Fast forward 3 weeks – Amelia can eat again. Small amounts still, but every day a little more: sushi, watermelon, croissants, dumplings, smoothies. Her swallow is normal, her confidence is growing, and she no longer fears choking. Even more incredibly – she can walk. From a few steps to laps of the ward, watching her move after months of paralysis is indescribable.
Her pain is easing daily, now managed with paracetamol. Today she rated her pain a “3” – after a year where it was never below “8.” She’s off TPN, central lines are gone, and we hope sepsis is too.
It’s early days and curveballs are always possible, but for now we’re celebrating the wins and feeling immense gratitude to the doctors here who understood Amelia and gave her back hope of a normal life. 🩷
Awesome work Amelia! So happy to hear about the great progress.
Thank you so much for your update. I'm thrilled to hear about Amelia's amazing progress and hope it continues. 🤗
Absolutely amazing!!
It’s been a big week, full of ups and downs. The only complication so far has been bladder pain, which we’re told is common after abdominal surgery with catheters, nerve irritation, and pain meds – it should settle with time.
After her blood transfusion last week, Amelia felt much less dizzy. Pain management here in Germany has been phenomenal. Even after her epidural was removed (which caused a tough day), her pain has never reached the levels of past surgeries in NZ, despite this one being far bigger. She’s not fully comfortable, but it’s manageable.
Each day brings tiny but incredible improvements. On day 5 we realised Amelia’s left leg was completely straight, her “drop foot” flat, no hip pain or discoloration. The next day, with support, she stood – both feet flat on the ground for the first time since January. She also attempted swallowing tablets (nothing swallowed since May 2024) and today took 7 orally.
She’s drinking water, iced tea, iceblocks, and we’ve slowly started her stomach PEG feeds, which she’s tolerating. She’s eaten raspberry, baby food puree, coconut yogurt, and tonight even asked for cheesy pasta – managing two pieces! To many, a sip of water or a bite of pasta seems minor, but to us it’s huge: she hasn’t swallowed food in 18 months. One piece of penne = pure joy!
She has a long road ahead, but each small step makes us more confident we’re moving in the right direction. 🩷
We made it! The flights were long and exhausting, but Amelia managed to sleep well, and we were able to run her TPN throughout. A 24hr stopover helped us hydrate, rest, and refuel for the second leg. Getting around with a wheelchair and what felt like 500 tons of luggage was… character building! European taxis and Ubers are not made for families like ours.
We arrived in Leipzig on Monday and have had time to recover. Yesterday we visited the children’s oncology ward to have Amelia’s port needle changed — in and out in under an hour, no appointment, and incredibly kind staff who helped us for free.
Today we met Prof. Scholbach for Amelia’s scans — and we finally feel heard. The validation was overwhelming. No one else had real answers about her leg turning in, going numb, or stopping working. But here, instead of her symptoms being brushed off, hours were spent finding the root causes: severe pelvic congestion, a completely obstructed left iliac vein (May Thurner Syndrome), spinal congestion, severe Nutcracker Syndrome, diaphragmatic vein compression, sciatic and lumbar nerve pressure, and a liver mass requiring more tests.
For the first time, everything is connected. Her pain, her leg, her inability to eat — all of it. There’s a chance that correcting blood flow could bring real improvement. We know there’s a long road ahead, but for the first time, we have hope. 🙏
So great to hear you arrived ok and are getting heard and have some answers. Hope the tests go ok, Paul said they were additional to the surgery, lots of love from Clare, Penelope and Georgia X
Wow… we did it!! In just six weeks, we’ve reached our goal! Thanks to every single person who donated, shared our story, offered auction items, or helped with events—because of you, we’ve made it. To every individual, family, business, school, and community group who supported Amelia, we are forever grateful. The love and generosity shown has completely overwhelmed and humbled us. We know times are tough and many families need help, so from the bottom of our hearts, thank you. Your kindness will never be forgotten.
We leave for Germany this Friday, with surgery scheduled in Düsseldorf on August 5th. The journey will be long and draining for our girl, but we know it will be worth it. The planning behind this trip has been immense, and once again, our incredible medical team—doctors, nurses, dietitian, pharmacist—have gone above and beyond to ensure we’re safe and ready, with all the necessary clearances to travel internationally with controlled meds, IV fluids, medical equipment, and TPN.
The emotions are big—anxious, excited, terrified, hopeful—but we are ready.
From our family to yours, thank you. We’ll keep this page updated, and while we don’t know how just yet, we are already dreaming up ways to pay your generosity forward 💗
Wonderful. Wishing you well on your journey.
Amelia has been doing okay, enjoying being home and sewing beautiful gifts for friends and family. But managing her health is a constant battle. Her condition—Superior Mesenteric Artery Syndrome (SMAS)—means her body can’t absorb food or fluids properly, and we’ve had some tough days balancing hydration. A spike in green bile output meant a couple of urgent trips to Waikato Hospital. Thankfully no new blockages were found, but it was a reminder of how fragile things are. A big IV fluid boost helped, and we were lucky to come home the same day.
Behind the scenes, we’re working non-stop to prepare for surgery in Germany—a massive operation that’s her only chance at a pain-free life. We’re incredibly grateful to our community for stepping up in so many beautiful ways. From motocross and movie nights to loom bands and fruit stalls, we are blown away.
We’re especially excited for Cocktails for a Cause tomorrow night! The A-Team has worked tirelessly and it’s set to be a magical evening.
From the bottom of our hearts—thank you all. You’re helping us get Amelia the life-saving care she desperately needs. 💛
Hey guys, you are all doing such a fantastic job! Do you have a date for Germany?
We’ve been home for two weeks tomorrow! It’s all a bit of a blur, and adjusting to life with a medically complex child has been tough. We’re slowly relying less on alarms and getting into a more settled routine.
The hardest part has been the dependency — Amelia needs help with almost everything due to her limited mobility. Even simple daily tasks require assistance, and I know it’s frustrating for her not being able to do things on her own.
Our days revolve around pumps and medications, but in the short windows where she’s disconnected, we’ve managed small outings that have been so good for her — from her brother’s school production to a hair appointment and even a quick visit to Northern Health School for a science fix. These little moments of normal are what we missed most in hospital. The pain still kicks in fast, but for a while, she’s distracted.
Being home has been the best thing for her mental health.
We continue to be absolutely blown away by people’s kindness. From donations to our Givealittle, to auction nights, motocross events, movie screenings, fruit stalls, and school fundraisers — it’s more than we could have ever imagined.
To everyone who has supported us in any way: thank you. We are so grateful. xxxx
We did it! We made it home! 2 weeks ago we decided as a family that we had to get Amelia home, she needed it, I needed it, the boys & Joe needed it... our family unit needed to come back together. So we gave a date of Friday 6th June to our team, and my word... the wheels were in motion instantly. To say we were supported in our decision would be an understatement... our entire team... our Drs, ward nurses, physio & OT, home care nurses, surgical nurses.. everyone got behind us & made it happen. On Friday, as we left to attempt 3 days of ward leave to test the waters, Amelia's amazing nurses had her do the loud speaker announcement for the nurses daily huddle, something Amelia had joked about doing for months. These amazing, caring & kind ladies (and gents) have been the one positive thing about being in hospital for 5 months. They have made a really hard time that much easier, always trying to get Amelia smiling, and giving her a send off from the ward that left me in tears....for that, I will forever be grateful to the beautiful E5 staff 🩷
Our first few days at home have been far from normal home life. The organization involved in running TPN & iv fluids from home is a lot, and caring for someone who is immobile & restricted is hard. I am tired, but it is worth it to see the smile on Amelia's face having her fur babies around. We Officially discharged today, and will spend the next few weeks finding our feet & building confidence, getting ourselves set to get on a plane
This is such a touching story, as a parent my heart bleeds for you.
Im loving the updates!
Day 152.... we are making steady plans to discharge & head home. My training is well underway to manage her TPN & medications from home, and we have started a new medication that we hope will help treat the awful colitis (driving factor & cause still unknown) and make being at home a bit more comfortable. Amelia has had a new central line placed this week, and everything is going well. We have been absolutely, mind boggling, completly blown away by all the amazing support & donations so far. It is overwhelming & so humbling to know so many people have helped pave our way forward. We are beyond grateful for every dollar, every kind message, and every share of our story. We are still getting so many heart warming messages, prayers & words of encouragement & I share them all with Amelia. Thank you, from our family to yours, for all of the generosity xxxxxx
