Samuels rare life

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

Samuel has had a great start to term 2!No major sickness and only missing part days of school for therapy or specialist ...
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!






Our brave boy is home and doing so much better! ❀️🀩πŸ’ͺπŸŽ‰Thank you everyone for your prayers and support, he really likes to...
01/04/2026

Our brave boy is home and doing so much better! ❀️🀩πŸ’ͺπŸŽ‰
Thank you everyone for your prayers and support, he really likes to keep us on our toes.

πŸ˜”πŸ’”πŸ₯ΉπŸ˜’Samuel is not doing well πŸ˜”After recovering from the last month of admissions, surgery and illness, unfortunately Sam...
30/03/2026

πŸ˜”πŸ’”πŸ₯ΉπŸ˜’
Samuel is not doing well πŸ˜”
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 πŸ™β€οΈ


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501 Stanley St, South Brisbane
Brisbane, QLD

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