The story of Sharifa
Ali Kimara (4yrs and 6months now) was a healthy and happy child before he got sick in August 2013 when he woke up in the middle of the night and started coughing, crying with high temperature. He went through a lot for a child to experience, 8 ICU admissions breathing on long time Life Support Machine, got in Semi Comma, 3 times Cardiac Arrest, done so many tests like Lumber Puncture, Lung Biopsy, Muscles Biopsy, SMA test, EMG, EEG, MRI, Brain and CT Scans, etc. etc. etc, with all that all the results were negative and normal. He is now on long time tracheostomy, being home all the time, on and off oxygen and sleeping with bipap machine but playing with his sister with one hope of living his life like all other children.
But when tragedy was meant to happen nothing can stop it, his little sister Nasreen (2yrs and 10 months now) got sick at the same age with the same signs as how it happened to his brother Ali, she was also in critical conditions and got admitted in ICU 4 times last year and was in life support as well. Its very hard for parents to live with their kids with no proper Diagnoses.
At first it was like a living hell for me and my husband when it started with Ali, as we had to leave the country with one critical child but also left a four month pre-mature child (Nasreen) behind.
Until now, Ali and Nasreen are living with no answers, helping them won’t only be for these two but also for other children who lost their hopes and faiths in life.
Your contribution by any means will save all other Children with Rare Disease.