Amelia's Journey

09/05/2026

We honestly don’t have words for the love and support being shown to Amelia and our family right now. 💛

Thank you so much to Gabby's Starlit HOPE for sharing Amelia’s story and helping us feel less alone heading into the coming weeks.

Every share, kind comment, message and donation genuinely means the world to us right now. ✨

07/05/2026

https://givealittle.co.nz/cause/amelias-journey-support-during-rare-high-risk

We’ve had some people asking how they can support Amelia during her upcoming craniotomy and recovery, so we’ve put together a Givealittle page for anyone wanting to help during this next stage of her journey ❤️

We honestly cannot put into words how grateful we are for the incredible community surrounding Amelia and our family. The love, prayers, messages, shares, support, and kindness shown since the very beginning have carried us through some incredibly hard moments.

Whether you donate, share, pray, or simply continue cheering Amelia on, thank you. It all means more to us than you probably realise❤️

Amelia’s Journey, Support during rare- high risk brain surgery

07/05/2026

We finally have an update on Amelia’s next step.

We recently spoke with Amelia’s neurosurgeon again, followed by another phone call to go over the many extra questions we still had afterwards. There has been a lot to process, and to be completely honest, some of it has been incredibly confronting to hear as parents.

Amelia is now penciled in for a craniotomy in early June this year … which suddenly feels very close.

Interhemispheric transcallosal craniotomy.

Interhemispheric = going between the two halves (hemispheres) of the brain
Transcallosal = passing through the corpus callosum (the structure connecting the two brain hemispheres)
Craniotomy = opening the skull

The team feels now is the right time to move forward with surgery due to changes in the tumour’s growth and anatomy, and because they can now see a safer surgical pathway to access it.

We have talked through the reasons for moving forward, the hopes of surgery, and also the heavy risks involved. Those conversations are not easy. Hearing words like memory changes, seizures, stroke, bleeding, death, neurological injury and brain stem, attached to your child’s surgery is something no parent is ever truly prepared for.

One thing we learned during these discussions is that Amelia’s tumour is "attached" to the top part of her brain stem. We still don’t fully understand exactly what that will means or means surgically, as “attached” can mean different things, and there are still questions that can only truly be answered once surgery begins.

What we do know is Amelia needs this surgery.

As terrifying as it is, we trust her surgeon and team, we know this operation is being planned very carefully. Her surgeon has explained that the goal is maximal safe removal while protecting the critical structures around the tumour.

Right now we are sitting in that strange space between fear and hope.

Trying to stay positive while also quietly carrying the weight of how serious this is.

Trying to keep life normal for the kids while internally counting down the weeks.

Trying to be strong while also feeling completely terrified some moments.

Alongside the emotional side of all this, we are also trying to work out the practical side of being away from home for Amelia’s surgery and recovery. While some things are covered through funding, many things are not. We will still have bills continuing at home, travel costs, food, accommodation gaps, and care arrangements for our other children who will be staying back home with family/sitters while we are away with Amelia.

We know times are hard for everyone right now, and asking for help never comes easy to us, but if anyone would like to support our family during this next part of Amelia’s journey, we would be deeply grateful. Even sharing Amelia’s story means more than you know.

More than anything, we are asking people to keep Amelia in their thoughts and prayers as we move forward. She is walking into a very big surgery with so much courage, even on the days she feels scared.

We’ve had quite a few people asking where they can donate/support Amelia during this time, so we will pop the Givealittle link here for anyone wanting it 🫶🏻

https://givealittle.co.nz/cause/amelias-journey-support-during-rare-high-risk

Thank you all so much for the love, support and prayers for our girl.
Thank you to everyone who continues to check in on us, support us, pray for Amelia, and hold our family up through all of this.

We appreciate it more than we can ever put into words.

Love always
🫶🏻🫶🏻🫶🏻

15/04/2026

15/04/2026

Sorry guys was unable to go live for this one
But took screenshots as it processed !

Congratulations Tracey-Keith Crawford you are the winner of our bolt cap raffle. I will message and get this sent out along with some cool jibbets !

Thank you all so much for your ongoing support !

10/03/2026

https://www.facebook.com/share/g/1JvL7ra9Qx/?mibextid=wwXIfr

96S Streetstock representing Amelia and Bodhi’s stickers
On his race car !
Feel free to check his car page updates at the link above

Thanks to Joshua Birkett Stick Em' Up stickers for making and donating the stickers and Holdin Heaven for there ongoing support of the Stratford streetstocks

Love the support from the community

Thanks guys

03/03/2026

Update on Amelia – 27 February 2026 MRI.

Amelia’s latest MRI shows that her pineal tumour has continued to grow.

May 2025 – approximately 7 x 7 mm
October 2025 – approximately 9 x 9 mm

×February 2026 – 14x15 x 11 mm×

There has also been a structural change noted, The centre/top of the tumour is no longer enhancing with contrast. This can mean several different things and isn’t necessarily a negative finding i think, but it does indicate that it’s behaving differently than before.

The reassuring news is that her ventricles and CSF flow remain stable, with no signs of hydrocephalus. For now, that is something we are very grateful for!

Symptom-wise, Amelia is doing really well at the moment (touch wood). Her headaches and cognitive symptoms are stable. We are still managing her POTS, particularly episodes of autonomic dysregulation in the shower, heat triggers tachycardia and can then sometimes be followed by an exaggerated vagal response, causing her heart rate to drop too low and leading to dizziness/near fainting. It’s dramatic when it happens, but it’s manageable and part of her normal day to day.

If I’m honest, this update is heavy, growth on a scan is always confronting. But what I’ve noticed over time is that waiting itself has become comforting. Not knowing, not rushing, not immediately jumping to surgery or treatment… it means that for now, things are OK. We are safe. We are managing. Nothing more, nothing less. That calm, steady space, the “we’re OK right now”, is something I never expected to feel, but it’s grounding and real.

Amelia is still our amazing, bright, stubborn, resilient girl, and we are taking this one step at a time.

Thank you for continuing to stand with her and with us. 🤍

04/02/2026

✨✨✨RAFFLE TIME !!!! ✨✨✨
Bolt Charm Hats kindly donated this super cool hat - add your own charms for a custom experience

Amelia was gifted a super cute pink version when donated covered in cool Charms

Check out there page here

https://www.facebook.com/share/1Fktm8qdiF/?mibextid=wwXIfr

I will provide a pack of charms to get you going when this is drawn
How amazing is this 🫶🏻✨

Tickets are $1 each there are 50 tickets available.

Comment below to secure your number/numbers
Once payments cleared I will put a green tick next to your names ✅

And a post share would be much appreciated too 🙏

I will do a live draw ( If able to ) to select the winner once all the tickets are brought

Best of luck guys !

Once the winners announced I will be in touch to organise getting your winning items to you

All money made will go towards direct cost of living for Mac, Courtney, Bodhi, Ruby , Amelia, Piper and Molly.

Thank you so much for your kindness and support.

This raffle isn’t sponsored by or associated with Facebook itself

Payments can be made to account

Bodhis journey
Under mums Name (maiden name )
Courtney Hawkings
38-9015-0142782-03

Please use your name as it show on Facebook as reference.

**🚨🚨note I am not always on Facebook - I will get to all comments and messages for raffle numbers in order of which they come through. Please be patient

1 Tracey- keith crawford
2
3
4
5 Tracey- keith crawford
6
7
8
9
10Bonnie Feel Bowles
11
12
13
14 Tracey- keith crawford
15
16Bonnie Feek Bowles
17
18
19
20
21
22 Tracey- keith crawford
23
24
25 Tracey- keith crawford
26
27
28 Bonnie Feek bowels
29
30 Tracey- keith crawford
31
32Isla Fox
33Bonnie feel Bowles
34 Tracey- keith crawford
35
36
37
38 Tracey- keith crawford
39
40
41
42
43
44 Tracey- keith crawford
45
46
47
48Isla Fox
49 Tracey- keith crawford
50 Bonnie feel Bowles

04/02/2026

Congratulations
You are the winner of this beautiful raffle !

Thanks to everyone for your on going support and a special thanks to the people and businesses that donated to these raffles.

29/01/2026

29 January - 30 January

This time last year, we went to the eye specialist thinking Amelia’s headaches might mean she just needed a new prescription for her glasses.

Instead, within minutes, everything shifted.
They found optic nerve swelling and asked us to hold tight while they rang specialists in New Plymouth. Our afternoon plans were cancelled immediately and we were sent straight there.

We spent hours doing test after test. Late in the day, they finally said it wasn’t an eye issue, it was a brain issue. We were sent to ED and an MRI was booked for the following morning.
I remember ringing my sister in an absolute state. Dropping the other kids off. Walking into hospital with Amelia while trying to stay upright. We were sent home that night, but neither Mac nor I slept.

We both knew.
We felt it in our bodies.
It felt exactly the same as with Bodhi, that heavy, sinking knowing.
30 January.

Amelia was an absolute blood champion, IVs, needles, scans, talking through everything like the brave little soul she is. We went up early for her MRI. The waiting felt endless.
Mac and I barely spoke. Just looks. We already knew the news wouldn’t be good.

When Bodhi’s head doctor came in and asked if we could step into a private room, I took a huge breath and said, “Are we really doing this again?”
I didn’t want to go.
Mac stood up, grabbed me, and said, “Come on.”
By the time that door closed, I think our souls had already left. They showed us the scans. The tumour. Where it was. They told us we’d need to go to Starship. We completely broke.
It was like living in full déjà vu, the anger, the disbelief, the why the f**k is this happening again? How do you even begin to tell your child something like this?

When we walked back out, familiar Bodhi nurses and faces looked at us, and they knew. That look alone undid me.

We went outside to call family. I rang my sister and couldn’t get words out, I just howled in the carpark. She knew immediately and said, “I’m coming.”

The rest is a blur. A quiet transfer to an ambulance. A Life Flight to Auckland. Arriving at Starship and being triaged in the same room we had been in with Bodhi.
That was too much. I was not okay.
The air crew were incredible, calm, kind, steady when I wasn't.
And then began another chapter we never asked for.

This past year hasn’t followed a clear path.
Amelia’s journey has been very different from Bodhi’s. There hasn’t been a straightforward plan, and that uncertainty has been one of the hardest things to live with.

Her tumour has grown.
And so has she.
She has faced all of this with a bravery that still amazes us, showing up, pushing through, and somehow still being her. Fun, adventurous, curious, and full of life.

We are so incredibly proud of the young lady she is. Every single day.

This time last year changed us.
These days still live in our bodies.
And writing this still hurts, because it mattered, and it still does.

04/01/2026

🤍🎉