My name is Sharifa a mother of two children Ali (4yrs 6months) and Nasreen (2yrs 6months). Ali was a happy and healthy child until one day when he woke up in the mid night and started coughing, high temperature and unconsciousness. There is where our journey started to where we are now.
He went through a lot during this 3 yrs from August 2013 to date! He paralyzed, lung collapsed, went to a semi comma, 3 Cardiac Arrests, with so many critical changes. We did so many tests on him like Lumber Puncture, Lung Biopsy, Muscles Biopsy, EMG, EEG, SMA test, some other blood tests, MRI, Brain and Chest CT Scans, etc. etc. etc., all that with Negative and Normal Results. He had 8 ICU admissions and supported his life by long time Life Support Machine.
Ali is now on Tracheostomy for 3rd year now, on and off oxygen, sleeping with Bipap Machine and somehow isolated but he can't shut down his dreams of living a normal life and pursue his bright future!
He has his beautiful and loving sister who is now in the same lane as Ali, she had 3 ICU admissions as well in this year of 2015 and was in about to be intubated but weaned her with oxygenation.
But as parents, we would never want to stop here, we wish to know what is happening to these beautiful angels and how to help them living their lives with no tensions.
Your contribution won't only help Ali and Nasreen, but also other children suffering with the same condition whether its known or unknown!
TOGETHER WE CAN MAKE THE CHILDREN WITH RARE DISEASE FEEL THE TRUE MEANING OF LIFE.