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)

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 ❤️

Update on Aseefa… she now in a ward and in a side room to protect her from infections as they start some steroids. Gett...
16/07/2026

Update on Aseefa… she now in a ward and in a side room to protect her from infections as they start some steroids. Getting a bit more verbal with some vague episodes but if she can be cheeky that’s a sign she getting better.
Lakhder Fouad Thank you for this amazing picture - Aseefa loves it

Oxygen off, observations more or less stable.Physio, still no movement on left side doesn’t move head left either. Slow ...
14/07/2026

Oxygen off, observations more or less stable.
Physio, still no movement on left side doesn’t move head left either. Slow reactions and limited verbal response. On the positive side she has some reflex’s on left foot.

As the Almighty wills and with the abundance of prayers from every religion,the intubation tube came out and she is a bi...
13/07/2026

As the Almighty wills and with the abundance of prayers from every religion,the intubation tube came out and she is a bit more alert- no voice output but responding with thumbs up or down. No left sided movement to be sure of, toes moved but possibly involuntary.@
One day at a time.
Thank you all ❤️

Update on Aseefa for everyone including her international Ostepetrosis family.Every time they try to wake her the Blood ...
12/07/2026

Update on Aseefa for everyone including her international Ostepetrosis family.
Every time they try to wake her the Blood Pressure rises but more worrying is the heart rate that goes to 145-152 and doesn’t come down till she’s sedated again. I think it’s more her anxiety and the environment but they can’t risk taking the intubation tube out in case she can’t breathe on her own and she is difficult to intubate. There is definite movement on her right but nothing from her left side- will know more about how the stirring has affected her when she’s fully awake.Thank you all for your continued prayers. ❤️

Update on AseefaThank you for your prayers and I’m hopeful things can improve but the MRI shows she has suffered a strok...
10/07/2026

Update on Aseefa
Thank you for your prayers and I’m hopeful things can improve but the MRI shows she has suffered a stroke which is affecting her left side from what can be judged presently. She is still sedated but less each day.

08/06/2026

Aseefa doesn’t need surgery as the antibiotics have done some good. Thanking you all again for your prayers

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