i've never come across CGD before..

few days ago, we went to visit the inlaws' friend whose child had just died of chronic granulomatous disease (CGD), a very case like 1 in a million. the inlwas weren't around so we went on their behalf.

only last week we visited them at HUKM. the boy was admitted to ICU. that was my first time entering ICU. it was quiet and quite depressing looking at people sick and in pain. but i can also sense hope in the room, people were praying faithfully for the best of their loved ones.

i was out of words. i was really quiet. inside, i was trembling because i have always dislike hospitals. i hate looking at people being sick because it made me feel useless. and helpless. thats what i felt that day.

apparently, the boy has been warded for a week. he was in coma. his brain shut down down suddenly. his parents work in qatar and had send him back to be schooled in malaysia. the moment they heard the news, they flew back immediately but the most sad thing is, they didnt get to see him wake up form coma till his death.

just so you know, his disease is very rare, only one in a million will be affected. im no bio genius but it is caused by some genetic disfunctions. the xY chromosomes thingy. just read here if you want to know more. so far, there has been no cure and only antibiotics to keep the infections at bay. of his 5 siblings, only one of them is not affected. they can't afford to be sick because they do not have immune system, like us, to fight back. the most effective way to avoid falling sick is to not play with soil. they are allergic to soil as it has some fungus/bacteria that can trigger infections in them. no going to waterfalls or playing in streams for them. but sand is okay so all they can play is with the sea water. once they get ill, they have to immediately get antibiotics.


so what happened is, the boy goes to a boarding school. being a such young spirit, he just couldnt resist the urge to play with his friends out in the field. imagine a young boy who couldn't play football at all? he was aware that he's not allowed to but he did. even worse, he played in the mud due to rainy weather. which he got a fever instantly.


he lay 5 days being sick and slipped in out of conscious. he couldnt call his nearest relatives. fortunately, his friend's mum who is a nurse took care of him. she tried her very best giving all the medication until he was well enough to tell his friend to call his aunt. they rushed him to the hospital, did operations. each of his organs collapsed one after another. if the kidney was okay, then the pancrease gave out. it was like that until the brain shut down. but before he lapsed into coma, he confessed that 'muaz main bola dalam lecak..sorry'


i was crying inside when i heard all this. he was only 16, sitting for SPM this year. he still had lots of things going on for him. and his family didnt even get to see him wake up from the coma. but i really admire the mother. in fact the whole family. they were so calm and strong. i can see that they were near to tears but they held back. because they know, with this kind of illness nobody could predict anything. if not for the soil, it could have been something else.

even though i met this family in not the best of circumstances, i am really glad to know such nice people. if i were in their place, i wouldnt know how to hold up my head. knowing me, i would just break down and questions things that shouldnt be questioned.

al-fatihah. may his soul rest amongst the salihins.