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Help Archie Thrive

  • Critically Ill in PICU

      26 June 2026

    Hi everyone,

    A lot has happened the last 48 hours - it's been intense. Archie was stabilised by the wonderful medical professionals in Wellingtons ICU - They are all heroes and total professionals. He was retrieved by Starship that night and moved into PICU. He handled the flight well and his oxy concentration needs had dropped from 100% peak crisis to 50% for the flight. He's about 45% now.

    Bacteria has been cultured out of any early blood sample but it appears the antibiotics he was put on do treat this strain so thats positive. It was the common cold that kicked this off.

    His intubation was difficult and lengthy. During that time his blood oxygen saturation dropped to as low as 20%. While in PICU they've started cooling therapy to help support him. The Dr's think at this time he is at low-risk of further complications but we won't know until he wakes. The are going to attempt to lift his sedation on Sunday, once this cooling therapy phase has been completed and remove his breathing tube. They are managing to get some mucus out of his lungs, which has also been sent away for testing. He has a long, long road ahead of him.

    It's hard to believe that less than a week ago he was on day 5 of his illness recovery - he was the best we'd seen him in a long time. 48 hours after that he's in critical condition. Mum is with him now, with Dad and Sis flying up Sunday.

    Thank you so much for your support, reaching out and aroha, it means so much.

    Dan, Coral, Lily, Archie

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  • Fighting for his life.

      25 June 2026

    Hi everyone.

    We never expected an update like this one. Archie is currently in Wellington ICU and will likely fly to Starship today. He has a severe case of pneumonia in his left lung with a small area in his right.

    Our sweet-natured wee boy has had such a hard run. Weeks and months of back to back virus. Mum and I have worked so, so hard to support him at home so he could finally get out the other side and recover. Indeed last week he was on the road to recovery. We had five amazing days of our wee boy being back with us. He was due to return to daycare this Monday just been but had picked up a small cold. We kept him home. By Tuesday he was clearly unwell again but not major. We had some hard nights but still thought it was just unfortunate.

    Yesterday he went downhill fast. Up until 10am he had no cough, and his short fever had broken the night before. By 3pm yesterday he was clearly a very very sick wee boy so we called an ambulance. They took him straight it ED, then ICU. All the medical staff are totally professional and compassionate as usual.

    When first sedated and intubated Archie was on 100% high flow oxygen. Thankfully this dropped to 80% around midnight.

    Mum will fly up with him today whilst Dad looks to join them (or swap with mum) in a few days time. Archie’s NAPA therapy placement will have to be given up and the funds used for this terrible time.

    Please wish our little boy hope and recovery. He’s so desperately loved.

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  • Recovery Delayed

      11 June 2026

    Hey All,

    Poor wee Archie is still unwell. We think his fever finally broke yesterday - 9 days long though he had a little wobble late last night. Thankfully it still seems controlled.

    He's still not well though. We expect him to be grizzly and out of sorts as he starts recovery and he's clearly in that way today but we will get him assessed by a Dr given the duration of this virus. Over the last four weeks he's had two major bugs, both with fevers and both lasting 9-10 days. So in a month he's had exactly two days of being himself. And that's on a looooong tail of other bugs, with Norovirus, then COVID kicking off this journey back in March 2026.

    One spark of good news though - despite the sickness, crying, distress, no sleep and everything else, he has put on weight. Yesterday he weighed 6.22kg - his heaviest yet. He's put on all the weight he's lost + 40g, and that is whilst sick and on reduced feeds so at least there's that.

    Hopefully the next update we post is one where he's been well for a week, going strong and about to return to daycare.

    Dan, Coral, Lily and Archie x

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  • One step forward, three back.

      4 June 2026

    Hey all,

    Wow the last couple of weeks have been tough. Huge efforts after Archie got home to support him, and by Friday - Saturday last week our wee boy was back as we know him - energetic, happy, kicking his wee legs and telling us lots of stories in his own way. It was genuinely a relief and a pleasure to have him back after 9 weeks of back to back viruses, culminating in the hospitalisation and a lingering virus. Everyone from daycare to his team to us were thrilled and relieved.

    And then Monday happened - he woke with a fever. We were totally crushed. Over the course of the day he deteriorated. That night the screaming began - we’ve never heard this before. He was totally inconsolable. This was very scary for is - we are already beyond exhausted, emotionally spent and dealing with this was almost too much. Early Tuesday night was just as bad, but he had two massive vomits around midnight which were all mucus. After that he slept for about 5 hours. Yesterday he was a little bit more settled and again slept okay last night. This morning he definitely looks on the up. We are keeping him home for two weeks to give him a chance at recovery. Ironically he’s now given his bugs to Dad with Mum sure to follow.

    Being honest - this has been hard. Very hard. But we are thankful for the ongoing kindness and support which really help physically, mentally and emotionally. Now we cross our fingers and hope.

    Dan, Coral, Lily and Archie x

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  • Home over the weekend

      26 May 2026
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    Hey all,

    Archie came home on Friday evening which was a huge relief. It's been a rough few days though - he's still battling his virus with his congestion in particular making his life miserable. He wakes very often and needs cuddles to help clear. Mum and I have had not much sleep for a long time but his old little self is slowly emerging which has warmed our hearts.

    His new formula (higher calorie) and medication for gut motility seems to be making a difference. It's hard to say in these early days but it seems positive - only time will tell but we are quite desperate for some stability, predictability and routines.

    He get another weigh in today - he's "on leave" from the ward so technically not discharged home, but hopefully he hasn't lost any more weight (indeed putting on some would be very welcome!) so we will see shortly.

    Thanks so much for the support and aroha everyone.

    Dan, Coral, Lily and Archie x

    (Thanks to Aunty Kryssie for such a beautiful picture of Archie and Lily)

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  • Hospital stay nearly over

      22 May 2026
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    Hey all,

    This has been a really hard hospital stay for

    Archie (and us). As soon as we arrived he developed a fever, congestion and cough which has made his life miserable, on top of the misery from poking, prodding, needles etc. Thankfully nearly all the staff were true heroes, in particular his day nurse who is a true Kiwi legend - thank you Ocky for everything you did for him and us.

    We’ve had some good news - his barium study has shown normal anatomy (pending specialist review) so it’s likely his vomiting is a motility issue which could potentially be addressed with medication. We’ve also got a higher calorie formula to help buttress his losses via vomiting.

    Plan is to get him home today so our family is complete again. As I said, it’s been very hard for Archie, for Lily (she really missed having her people together) and the grinding logistics of tag-teaming hospital stays for Coral and I.

    Thank you so much for your continued support and Aroha.

    Dan, Coral, Lily and Archie x

    (Pic of Archie after a 4am sponge bath - he was covered with every crust you can imagine and it made him feel human again, for a while)

    P.s - kudos to the new hospital caterers - the food is actually very tasty now and the fantastic support staff.

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  • Back to Hospital

      18 May 2026
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    Our brave wee boy is back in hospital, this time for a week or more.

    Over the last 7 or so weeks his vomiting became quite bad again. We had Norovirus, Covid and other misc viruses back to back. Three weeks ago he was weighed and had lost about 250g and was sitting below 6kg again.

    For the last three weeks we’ve worked so, so hard to stabilise him and to support his weight gain. We managed to knock his vomiting down to 1-2 times a day (down from 7-8 during the bad bugs) through huge effort. We were shocked then to find that his second to last weigh in he’d lost more weight. He had another today where he still hadn’t put any on. His team decided he needed to be admitted to hospital.

    So now the journey begins on trying to understand why he vomits so much and stopped gaining weight. We are looking at a week, possibly two or more in hospital as they want to get to the bottom of it and see him put back on some good weight. This will be a grind and really disruptive to our close knit family but it needs to be done.

    Poor thing developed a fever once we got here (likely related to his 15 month imms recently)

    Not a great update but it is what it is. Once again thanks so much for all your support.

    Dan, Coral, Lily and Archie x

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  • Vomiting update and next steps

      4 May 2026
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    Hey all,

    Late last week we had a follow up conversation with his Paediatrician to understand what the next steps are. should his vomiting or weight loss continue. The nutshell version is he will be hospitalised for some time, to closely watch him and get weight back on. It’s possible he’s suffering from delayed gastric emptying. There are some options available to treat this but it would need testing.

    We are keeping him home from daycare now if he has even the hint of congestion or illness to ensure we can manage him closely. The last few days have seen only 2-3 vomits a day which is progress - his next weigh in is Wednesday, at which point we’ll all make a call on what to do next

    He’s been babbling much today though (mamama dadada and bababa) which is exciting! He’s also slept fairly well the last couple nights - hopefully a corner is being turned.

    Dan, Coral, Lily and Archie x

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  • Weight loss and vomiting

      30 April 2026
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    Hey all,

    Archie finally had his appointment with his Paediatrician (since we’ve been handed over from NICU to Paediatrics).

    As expected he’s delayed almost everywhere - gross motor skills, communication, oral feeding etc. He does seem to be on track with his social engagement though. As usual he’s sweet natured and happy.

    His vomiting is back. Post surgery in Oct it stopped completely for about six weeks but then slowly crept back on. It doesn’t follow a predictable pattern - sometimes it’s illness related, other times congestion and yet others there is no rhyme or reason. The last month it has been particularly bad, which has seen his weight drop down to 5.92kg - about where he was late last year. This sucks. Every gram and calorie we get on to him his hard fought so to see him lose that weight, those reserves and the potential development is heartbreaking - let alone how horrible it is for him. We are tweaking feed times, volumes, positions to try to stem the tide. His daycare are also happy to work with whatever schedule he needs so time will tell.

    Finally we just wanted to thank everyone again who’s donated, shared and reached out to us. We know times are very hard and your generosity touches us everyday. Thank you so much - you all give us strength and hope.

    Dan, Coral, Lily and Archie x

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  • April 2026 Update

      22 April 2026
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    Hello everyone,

    Our apologies for the long hiatus between updates. We’ve had a very busy start to the year with Archie, Lily, illness and work.

    Archie moved into a new daycare who has previous experience with kids like him. He is absolutely thriving! He is a firm favourite of the staff and other young babies who love interacting with him. He’s revelling in having friends - they chat to each other, spend time outside on the mat and they bring him new toys. It warms our hearts to see him so involved with his wee friends.

    Development wise he’s doing his best. He can now roll from his tummy to back and sometimes back again. He’s also blowing raspberries at us, reaching for objects he wants, and getting very grumpy indeed if we don’t give him all the attention he desires. His strength is slowly improving. In other big news his SLT is fairly certain he knows his first word - Kai! (Ironic). His speech is delayed due to his hearing loss - he’s getting hearing aids soon.

    Eating is still a challenge. He’s having tiny tastes of yoghurt - this takes him about 20 attempts to swallow. His vomiting is slowly reducing on this front though. He’s still his happy sweet natured self for which we are forever grateful for. Despite his challenges he is a real joy to be around.

    Thanks to all of you his therapy is now paid for and starts at the end of July. Thank you to every single one of you. We think of you all often.

    ( Oh he had a haircut)

    Dan, Coral, Archie and Lily x

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  • Humbled and Thankful

      2 February 2026

    Hello everyone.

    Well to say we are humbled and blown away would be an understatement. It was very scary to go on the news to push Archie's story out there but your response has truly humbled us. Thank you so, so much to everyone - past and present - who've donated, messaged us and wished Archie and us love. We are so thankful to all of you for sharing what you can in these hard times. You're all part of this amazing little boys life now - you are directly influencing his future with your support.

    His journey is far from over though. We'd be eternally grateful if you keep sharing, keep talking about him and keep thinking about him.

    Much love

    Dan, Coral, Lily and Archie.

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    • 02/03/2026 by Danielle White

      Hi Dan, Coral, Lily and Archie 🤍

      As a first-time mum to a little one with a rare genetic condition, I just wanted to reach out and say — I see you. I truly feel what you’re going through.'

      From the endless NG feeds. The machines. The waiting rooms. Watching your beautiful baby go through surgeries and things no tiny human should have to face. It’s brutal. And it’s a kind of strength you don’t even realise you have until you’re living it.

      Some days you’re strong. Some days you’re just surviving. Both count.

      This road isn’t one we ever imagined walking, and a quiet club of us walking this road but the love we have for our babies is bigger than all of it. Fierce, protective, exhausted, hopeful — sometimes all at once. Celebrating the smallest wins and carrying worries most people will never fully understand.

      You’re doing an incredible job, even on the days it doesn’t feel like it.

      Your little one is so deeply loved, and that love is the most powerful thing in the room every single time 🤍

      Sending strength, understanding and so much care your way.

      Danielle x

  • Archie is now 1!

      31 January 2026
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    Archie had an awesome birthday party with his family today. It’s been a big year for Archie and our family. He’s a fighter and has shown how resilient he is. We’re so proud of how he’s faced everything that’s been thrown at him. He’s such a bright and happy little boy and we’re looking forward to seeing what the next year brings. We thank you all for your ongoing aroha and support.

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  • Nearly 1 and an opportunity

      27 January 2026

    Hey everyone,

    Archie's about to turn 1 - hard to believe it's been nigh on a year since this awesome little boy came into our lives. Post surgery things are going ok - Still as sweet natured as every. He's much more stable, less vomiting and starting to learn how to roll onto his side. He's kicking his legs like he's running a marathon and even started babbling! Still no success with starting solid food - it's thought his hypotonia is affecting the muscles in his throat so he's still on scheduled pump feeds which can be a grind.

    An opportunity has presented itself. The NAPA Clinic (from Australia) are doing a pop-up clinic here in Wellington for an intensive three week clinic in July. The clinic offers specialist movement based physiotherapy, as well as other therapies that can help kids with swallowing. Archie is eligible and has been accepted. This comes at a cost though - at least $7,500.00 NZD. We are very reluctant to ask people for further help but this could be a life changing opportunity for him and our family. Please send this far and wide to your networks and social circles. Any and all help is very gratefully received.

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  • 1.5 weeks Post op

      26 October 2025
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    Had a good day today with Archie. He was much happier and active today and was shaking much less discomfort from his tummy. He went through so much, and his post op care has been intense and challenging but we hope he’s turned a corner.

    He’s responded well to the removal of the NG - much less fetching, gagging and of course vomiting (no vomiting in fact) so we hope once he recovers of the next six weeks, life will be much better for him. It’s been a real pleasure to see him without it takes to his face.

    Thanks everyone for all to our support. Every donation has touched us deeply, and we appreciate every page share to get Archie out there.

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  • Home now.

      20 October 2025
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    We are pleased to say that Archie came home yesterday! We are so happy to have our little family back together. It’s been so, so nice to see his face without tape or a tube.

    It was a stressful few days, watching our wee boy post op but he pull through like the fighter he is. Now we are adapting to our new normal so (of no vomiting yay!!!!) and adapting a new routine to his g-tube. We are looking forward to this being replaced with the button in 6 weeks or so.

    Here’s to doing normal things as a family finally. And no more nasal tube or tape on his face!

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  • Surgery success

      17 October 2025
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    Archie’s surgery went well on Wednesday. Due to his small size they weren’t able to get the Mic-key in so he has a G-tube for the next six weeks. The Nissen went well, grommets in and heart echo normal. We’ve got a road of recovery ahead of us but early signs are things look like they’ll be ok. We’ve asked a lot of his little body but he’s a fighter and we know will do his best, as always. But no more nasal tube!!!!

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  • Surgery tomorrow

      14 October 2025
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    Surgery day is tomorrow. We are quite apprehensive at this point but it'll be good to get it over with.

    We’re towards the end of two weeks of quarantine for Archie, and a week for his sister to try to limit bugs. Touch wood but it seems to have worked. Archie’s been happy and sleeping a bit better lately so that’s given mum and I a chance to recharge a little bit.

    Hopefully this pic is the last one of him with tape on his face and a tube in his nose.

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  • Archie’s daily feeding routine

      9 October 2025

    To give an idea of what daily life looks like caring for Archie, here’s what we do for each of his bolus feeds (his night feed is via pump so a little bit different but just as complex):

    Feed Prep (every 3–4 hours):

    • Boil the jug

    • Add 120ml chilled boiled water to the bottle

    • Add 60ml boiling water

    • Add five scoops of Neocate formula

    • Shake and level to 150ml total

    • Add iron and vitamin D (if morning feed)

    • Prepare tissues in the bassinet for spills

    Feeding:

    • Connect bolus syringe to Archie’s NG tube

    • Slowly give the first half of the feed, watching for reflux or vomiting

    • Give the second half once settled

    • Flush the tube with water

    Aftercare:

    • Wash and sterilise everything

    • Monitor for spills, coughing, or distress

    • Repeat during the day

    Each feed takes around 30–40 minutes from start to finish. This routine runs morning to night, every day.

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  • Surgery countdown

      5 October 2025

    Only 9 days to go until surgery day (Oct 15th). We’ve taken Archie and his sister out of daycare now to ensure there are no bugs and so he can recover from his current one before surgery day.

    We’ve waited for what feels like ages, but in reality is not much time at all and others have to wait longer than we have, so for that we are very grateful. We just want the vomiting, the aspirating, screaming, lost calories, long illnesses and sleepless nights to ease. Fingers crossed this all works out for him.

    Thank you to everyone who has supported our wee family - you all mean so much to us.

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  • Pre-surgical assessment #2

      3 October 2025

    We’ve just seen his ENT for his second pre-surgical assessment.

    They’ve approved doing his grommets if it’s safe to do so, given how tiny he is. Fingers crossed that helps his hearing and any discomfort the fluid in his ears are causing.

    Now it’s time to wait for surgery day. The focus is to help him get over this latest respiratory bug and get well for surgery.

    We’ve ended the week with five appointments.

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  • Pre-surgical assessment

      29 September 2025

    We’ve had our first pre-surgical assessment with the Anaesthetist. The next one later this week is with his ENT.

    It’s critical he is well for this operation so we are taking him out of daycare for the weeks leading up to the surgery to ensure he’s as well as can be. As you can imagine, juggling him, work and everything in between will be intense but it’s the best course of action.

    The operation itself is going to be:

    - PEG to insert Mic-key button

    - Nissen Fundiplication

    - Grommets

    - Heart Echo scan

    - Blood draw to check for nutrient absorption

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  • Context - How many appointments, spills, etc

      26 September 2025

    We thought it'd be interesting to provide a snapshot of what it looks like caring and advocating for Archie:

    Over the last five weeks:

    - 226 spills / vomiting events

    - 161 tube feeds (nil oral feeds)

    - 14 medical appointments

    - 20-25 correspondence with his medical team (texts / emails / phone)

    - 70 Loads of washing

    - 5 wakes per night (on average)

    - Two weeks of daycare absence

    This doesn't include the endless worrying and yoyoying about his future and what it means, whilst also working full time and caring for his 4 year old sister. It feels relentless.

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  • Advocacy win

      25 September 2025

    After weeks of advocacy, pushback, vexation, frustration and struggle we finally convinced his Drs to prescribe NeoCate formula.

    When Archie switched from EBM to formula, he didn’t react well to it at all. His vomiting reached crisis levels (think 15+ times a day, sometimes entire feeds) let alone the awful nights. We then were switched to a hydrolysed formula which essentially did nothing for five weeks. He started to settle a little bit on it but nothing like his baseline.

    Now that he’s been on the NeoCate for just 24 hours he’s much more settled. We hope this will allow us to get a bit of rest before his surgery in a few weeks (particularly as we need to take him out of daycare to ensure he doesn’t get sick)

    If you’re a parent advocating for your child, stick at it. It can get exhausting and frustrating but the results speak for themselves. Trust your gut. You know your kids better than any person on this planet.

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  • Surgery booked

      23 September 2025

    We finally have a date for Archie’s surgery to try to control his reflux and vomiting. He’s going to have a Mic-key button inserted into his tummy along with a Nissen Fundoplication. This means new can remove the NG tube and tape from his face! We’ve only ever seen his face without the NG and tape for a few hours his whole life so we are very excited about that.

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