Friday, December 28, 2007

My Journey


Ever since my girls started their treatment with Myozyme (the missing enzyme) infusion April 2006, I have been visiting the hospital once every 2 weeks. Every time, it's a half day trip upto KL. In every of my visit, I will be meeting some other children that suffered from some other genetic problem.

It thought me a lot of thing. At least I know my girls are very fortunate, they don't have any major unreversable damage physically & mentally. And they have treatment started despite the high medical cost. Not all are as lucky as my girls, in fact most of the cases are sad. A lot of the cases have a diagnosis but no treatment to cure, the children may be taking lots of medicine but just as supplement. The medicine may delay the progress of the symptom but would not cure the disease. There are some cases that the diagnosis was not confirmed due to the ambigous symptom, without a right diagnosis; treatment can not get started. There are also cases that have a diagnosis but treatment can not get started due to the high medical cost.

I felt deep sympathy for these families as I too went through the process of waiting for the diagnosis, waiting for the budget allocation from Health Ministry. It's really a mental torturing process as one would not know how long the child would live. The heart was so fragile then and was so worried when the child fell sick due to fever, cough and cold. The feeling was like walking on a tiny string (as thin as the spider web) hanging high up in the air...You don't even dare to take a deep breath. Any mistake, he will be gone in the next moment...

I hope I could help them but nothing much I could do. So, I would pray for the child to have treatment soon. At the same time, I have been sharing my story with others so that more will come to know about genetic error diseases. What is the probability of getting it & how to avoid getting it. In Malaysia, pre-marridge screening is not common. Everyone takes for granted that their children will be fine. The other thing is, I hope this group of less fortunate child have the equal right of getting treatment regardless of the medical cost just like a diabetic or any other common diseases.

I really hope more will come forward to join me as this is a long journey, no one could do it alone.


Wrote in 27 Dec 2007