Samuels rare life

02/04/2026

Happy Easter from Samuel!! ✝️

Samuel went to his Easter festival at school yesterday and had lots of fun with his classmates.
There was messy play, sensory activities, bubbles and he even got a tattoo!
They finished off with a parade in their fancy Easter shirts 🐰🥚🤩
So thankful he was well enough to attend ❤️

01/04/2026

Our brave boy is home and doing so much better! ❤️🤩💪🎉
Thank you everyone for your prayers and support, he really likes to keep us on our toes.

30/03/2026

😔💔🥹😢
Samuel is not doing well 😔
After recovering from the last month of admissions, surgery and illness, unfortunately Samuel had to go in an ambulance this morning to hospital.
He is staying overnight in kids ward.
He suffered lots of vomiting, high temps, high heart rate and had a bad seizure.
Vomiting made it hard to keep meds down and he's been very upset and hasn't slept.
All tests have come back negative or not very conclusive as to what could be causing this.
Maybe his disease is having a 'flare', attacking his immune system.
It's hard to watch him suffering 😢
Hopefully he can sleep tonight, and that his temp and heart rate lower and tomorrow we can head home to manage symptoms there.
Please pray for our brave boy 🙏❤️

28/03/2026

After only 3 days back at school, Samuel received his first award! 🎉💪🏆
We are so incredibly proud of his strength and resilience 🤩❤️
He had so much fun painting, being outside, singing nursery rhymes and playing, and was so happy to be back with his teacher, aides and classmates.
He especially loves hanging out with his long time bestie Ollie ❤️

26/03/2026

Today is Epilepsy Awareness Day.
Samuel experiences seizures every day, multiple times a day. Some are big, some are little. He takes many medications to keep the bad ones at bay.

Seizures can happen to anyone, anywhere and at any time.
Today is a great opportunity to educate ourselves on seizures, you never know when you might need to help someone who is experiencing a seizure 💜💜💜💜

25/03/2026

He's back 💙

Samuel is feeling much better and heading back to school, to hang out with his crew.

Strong, brave and always smiling 😎

15/03/2026

SAMUEL IS HOME!!!! 🎉🎉🎉🎉

He came off oxygen yesterday and finished his antibiotics.
He is still struggling with a bit of a cough and sick tummy from the antibiotics but able to be managed at home.
Unfortunately he has tested positive for Parainfluenza 😔
Samuel is happy to be home and we are thankful we can now manage his recovery and keep him away from nasty viruses.
Thank you for your continued prayers! 🙏

14/03/2026

Some special visitors for Samuel today 🧸

Dad-dad came this afternoon and made sure a few of Samuel’s little friends came to visit him today to help cheer him up.

They all gathered around his bed to keep him company while he rests. Lots of quiet chats, encouragement, and friendly faces keeping watch over our little warrior.

Of course, every visit has to be supervised…

Samuel’s best friend Terry the Turtle 🐢 and Gary the Giraffe 🦒 are making sure everyone behaves themselves.

Samuel has been watching them closely and taking it all in. Even on the harder days, he continues to show that strong little warrior spirit we know so well.

Thank you to everyone who continues to keep Samuel in your thoughts and prayers. Your support means more to our family than you know. 💙

13/03/2026

Settling in for our 9th night in a row in hospital 😴🫩😔
Samuel is fighting hard but is exhausted 😔
Not sure how much longer til we can go home.
Please keep praying that Samuel can wean off his oxygen! 🙏🙏🙏

13/03/2026

Hello Samuels followers 😊
Samuels school P&C is running an Easter raffle fundraiser.
If you would like to buy some tickets or donate to the Easter hampers please PM me 🐰🥚❤️🎉👩‍🦽🧑‍🦽

We need donations for our Easter raffle. If you or anyone you know would like to donate it would be greatly appreciated.