To be honest, it is actually emotional question because I have been determined to get my treatment overseas all these years for the sake of maintaining my quality of life. I have seen how other local NF 2 patients deteriorate as the result of having surgery locally. I know them personally as friends and I know why their surgery failed technically. That is why it is emotional to answer this question. I feel sad for what happened to my NF 2 friends and how their families were left behind broken hearted. Yet, I don’t want to scare my supporters by telling the blunt truth. It is too tragic, in fact when an NF 2 in Malaysia dies due to poor treatment, their family members will keep quiet and want to just put it behind them. They won’t want to talk about it anymore, that’s why the public does not know the truth. Patients do not speak for the truth is unspeakable.
I can not afford to deteriorate or become incapacitated. At first, my dad is already living with a damaged brain resulted by an episode of stroke when I was 3 years old. My mother was at wit’s end dealing with my father’s diminished mental capacity and shouldering the household burden. Now, my father is gone but my mother is already 68 years old and weak in her old age. If I become incapacitated, my mother will be in desolation and despair. She won’t be able to find the money to take care of me and her life will crumble. All these years when I raise funds for surgery, I press on so that this will not happen to my family.
I hardly tell anyone the reason for my determination and kept it to myself because I did not want to make myself sound noble because I am not. At the same time, I also could not tell people honestly that many NF 2 patients in Malaysia have died due to poor treatment because people, in general, do not like to hear about negativity even if it was the truth.
But, watch the video below. I could still dance on stage at the PJ Civic Centre on July 2017, after having survived 20 neurosurgeries. Beautifully isn’t? I can do this, thanks to all people who have supported and still supporting my fundraising projects. My mother is fairly peaceful today because of all the help that we have received.
Can my surgery be done locally? The answer is yes, but I will not survive.
Contributions can be channeled to my Malaysian bank account or paypal below