Osteopetrosis Awareness Campaign

Osteopetrosis Awareness Campaign Osteopetrosis - "I fight this fight for YOU

Also known as...
Albers Schonberg Syndrome
Marble Bone Disease
Brittle Bones
(often mis-heard/mis-read as OSTEOPOROSIS)

26/09/2026
25/09/2026

Update on Aseefa.
With the grace of the Almighty she is getting better.

Catching some sun
26/08/2026

Catching some sun

That look of relief and happiness at being home
21/08/2026

That look of relief and happiness at being home

21/08/2026

She’s home !

Update- She’s on regular food now - no more puree food.Let’s see how much of this she eats?Any guesses?
13/08/2026

Update-
She’s on regular food now - no more puree food.
Let’s see how much of this she eats?
Any guesses?

Update, enjoying a hot chocolate !
09/08/2026

Update, enjoying a hot chocolate !

28/07/2026

Getting there slowly and she wanted to thank you all herself

Aseefa says thank you everyone for your prayers and kind messages. By the grace of the Almighty, although she still has ...
19/07/2026

Aseefa says thank you everyone for your prayers and kind messages.
By the grace of the Almighty, although she still has a long way to go, she is slowly getting better verbally. Right side is moving but only involuntry movements in left leg and nothing in left arm.
Docs saying it is vasculitis, possibly because of Osteopetrosis or the infections she’s been getting. More tests to be done. Will keep you all updated ❤️

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