Update’s on Zavier our little warrior

16/02/2026

11/02/2026

Our babe is growing up so fast 🥺💖
First day of year 4 🏫🎒

02/02/2026

Like many people you may think that having epilepsy is just a matter of it being treated and controlled with a tablet or two. For many, this may be the case, but for me it's not that simple. Here is a timelapsed video of my mummy preparing my weekly medications (actual time was 26mins). Each day I have 22 different medications, over 6 times per day so my mummy makes sure they are prepared weekly and daily. Not all these medications are for my epilepsy, but they are necessary to treat my other conditions that have derived from my epilepsy being so severe. It is amazing how organised my mummy is in order to make sure I get the treatments that I need to keep me as safe as possible. Thank you mummy I love you and appreciate you very much.
Love Zavier 🥰❤️💜💚

UPDATE:
Although Zavier is needing oxygen most days since we got home from hospital on Christmas Day, he is doing well. We have a meeting with his school this week to get some plans in place so we can start transitioning him back to school hopefully very soon 😁

24/01/2026

It's that time of year again. We are participating in the Purple Walk for Epilepsy WA once again on behalf of our little Epileptic Warrior Zavier to help raise money and awareness for Epilepsy WA. Please help us to help them by joining, sharing our page and/or by making a tax deductible donation 💜

Hello!We’re proud to be taking part in Epilepsy WA’s annual Purple Walk 4 Epilepsy WA & Family Fun Day on Sunday, March 22, 2026 at Curtin University. We’re fundraising for a cause that means a great deal to us, on behalf of our little Epileptic Warrior Zaviernd we’d love your support.Epilep...

29/12/2025

We are finally home 🤍

Zavier is still not out of the woods, and we still have a long recovery ahead. The reason we’ve come home is because we believe he will recover better in his own environment. We will have a nurse coming daily to check on him and make sure he is stable enough to be at home, but for now, we’ve broken free from the hospital.

The breath-holding episodes have become more manageable. His seizures are still violent, but they are also slightly more manageable than before. He is still very chesty, but we are hopeful that the antibiotic nebulisers will help clear this soon. So far, he is absolutely loving being home.

We would also like to say a huge thank you to everyone who provided meals and gift cards while we were in hospital. The support truly helped us get through another horrible time, and we are so grateful for all the love and support shown to our family 🤍

25/12/2025

23/12/2025

Hey everyone,

We’re so sorry we haven’t updated in a little while — the past week has been an emotional roller coaster for our family.

Zavier had a really rough week, with multiple tonic seizures. One occurred while he was undergoing a test, and he became unstable very quickly, which meant he had to be rushed back for urgent care.

We trialled caffeine but had to stop it two days after starting. Today, we’ve recommenced the trial and are hoping it helps. Zavier is now on permanent oxygen (1–5 litres) to assist with his breath-holding episodes and to help prevent him from turning blue.

Unfortunately, this means we’ll be spending Christmas in hospital, but we’re hopeful we’ll be able to come home sometime next week.

Thank you all for your continued love, prayers, and support — it truly means the world to us 💙

10/12/2025

Hello to all of our amazing support system,

First of all, I want to say a huge thank you and so much appreciation to every single one of you who has donated meals or Uber Eats gift vouchers. We are honestly so grateful. Your kindness has helped us more than you know, and it truly means the world to us.

Update…

Respiratory:
From a respiratory point of view, Zavier is doing much better. This round of antibiotics has helped him so much. The plan from here is for him to continue with oral antibiotics through his PEG, as well as an antibiotic via nebuliser for the next month. After that he’ll have a review, and they may continue the treatment depending on how he’s going.

Breath Holds:
Zavier has now started breath holding down into the low 40% oxygen levels and turning blue. Because of this, we have a new plan. He will now be on 1–2L of oxygen throughout the day so that when he does have a breath hold, he has support ready the moment he takes his next breath. This also helps him during the day when he randomly drops into the low 80s without any obvious trigger.

We’ve also discovered that he has traces of Rett-like symptoms, which is now under investigation. They are starting him on a new trial medication aimed at managing the breath holds, so we will see how he responds to that.

Seizures:
He is still having lots of seizures. A couple of days ago he had a bad run of tonics and ended up dislocating his elbow during a tonic-clonic seizure. There was also a scare that he might have broken his arm, but thankfully it isn’t broken. His elbow has been put back into place and is okay, but the seizures are still happening daily and he is still needing rescue medication regularly.

I personally feel that the breath holds are triggering the seizures, so I’m really hoping that if this new trial medication can help reduce the breath holds, we might finally see a decrease in the seizures too.

Thank you all so much for your ongoing love and support throughout Zavier’s journey. We appreciate every one of you, and I’ll continue to keep you updated as the weeks go on.

01/12/2025

Hi everyone,

As many of you know, our beautiful boy Zavier is currently in hospital. Due to the severity of his condition, we’ll be here for quite a while, and most of our days are spent right by his bedside. Things feel incredibly overwhelming at the moment, and we’re doing our best to keep everything at home running while staying focused on Zavier’s care.

A few people have kindly reached out asking how they can help. We feel a bit hesitant to ask, but the truth is that having meals organised takes a huge amount of pressure off us right now.

Thank you all so much for your love, support and kindness — it truly means the world to us.

https://www.mealtrain.com/trains/gze02o?fbclid=IwRlRTSAOZLFZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEel-pHdsto3RY6xlKNgCr5evbPJ9NXHLryDJ7M4BMJb2hs__fYT39kZG-y3eo_aem_POZWpOrPnbukyy_wFBsCow

Hi everyone, As many of you know, our beautiful boy Zavier is currently in hospital. Due to the severity of his condition, we’ll be here for quite a while, and most of our days are spent right by his bedside. Things feel incredibly overwhelming at the moment, and we’re doing our best to keep eve...

01/12/2025

Hey Everyone

Over the last 24 hours Zavier has gone downhill again. He’s been having constant breath-holds and seizures, and he’s now back on high-flow oxygen.

The team are unsure about the next steps because he’s finally awake and alert, but if they give him rescue meds, he’ll be completely zoned out again so we are just taking things hour by hour right now.

Thank you all for your love and support — it really does mean so much.