Samuels rare life

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Samuels rare life

This is a personal blog to keep everyone updated on Samuel and our journey with AGS.

19/05/2026

Samuel has had a great start to term 2!
No major sickness and only missing part days of school for therapy or specialist appointments.
He has been loving school, especially now that his standing frame and activity chair are part of his every day routine.

Today he went with his classmates to the 'Under 8s day' at Beaconsfield State School (across the road from his school). He had lots of fun joinging in on the many activities!

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! 🙏

Address

501 Stanley St, South Brisbane
Brisbane, QLD

Website

https://www.gofundme.com/f/support-samuels-journey-to-mobility-and-independence

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