The Dream

Have you ever have a preview dream ? I do...

I know I dream everyday but I almost instantly forget totally about it the next morning as if there is no dream at all. But I just could not forget about this particular dream. It's really a scary one.

I dreamed of having a baby girl with deformed limbs. The baby girl looked quite terrible. Then this baby talked to me while she was still in the womb. She was asking me not to abort her due to the physical disability. I told her that I won't as I just couldn't do that... She was happy with the reply and had a big smile. Then she told me not to worry for her as she will be fine, she can take good care of herself. She told me too that her existence will help her sister and a lot more. Before I could ask her more, I woke up in the middle of the dream. The dream was so real, I felt as if I was really pregnant again. Though I acted so calm in the dream but I was frightened truly by the thought of the baby's disability when I woke up.

I have decided to keep the dream as the dream, so I told my hubby that we will stop production since we have a pair of children with different sexes. However a promise is a promise, the more I would like to run away the more that I got it. I was pregnant 2 months later.

It was the most difficult pregnancy I ever had, the mental stress was huge. I thought of the dream almost everyday but I dared not tell my hubby or anybody about it and didn't know what to do except for carrying on with the pregnancy.

The dream had haunted me till the day when Wei Ling was born. When she was delivered with 4 complete limbs as normal as her other two siblings. I was relief, I thought everything will be alright, it's just a dream.

After she was a year old, she would be sick almost every month. I almost lost my sanity taking care of her for the first few months, it was truly difficult as she would not be sleeping through out the night. Luckily my mom stayed with me for 6 months to help out. Else, I would definitely collapse and things will be totally different now.

Finally, the dream revealed it's true color when Wei Ling was 1 year old. She was diagnosed with Pompe (Glycogen Storage type II), a very rare inherited metabolic disorder. It was really due to her existence that we came to know that Yen Ling is also having Pompe.

The dream was just trying to prepare me to go through the challenge. I understand now why it only took me such a short time to accept the fact that my girls are having inherited disease as compared to others. I just realized I have started prepared myself even way before the pregnancy.

Now, I would just prayed that the last part of the dream will come true that both girls will be fine. That everything will be well taken care of with or without me and my hubby.

Wrote in 3 Jul 2008

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