Just got the news from Patricia through FB that a Malaysia Pompe baby girl Xin Er passed away 2 days ago in Singapore. Even though she had started getting Myozyme for some time in Singapore but she did not get well after the infusions. Another case of late treatment...So sad...
I didn't have a chance to meet up with her yet, I thought I may see her this coming 3 Sep 11 at RDSS Fund Raising Piano Concert. But she chose to leave early. Guess it's too painful to go on the difficult journey...
She is supposed to come back to Malaysia for treatment but her applicatin process is still not completed yet after few months. This is one the areas that MLDA might be able to work out with Health Ministry. We need a better and faster approval system for all the special little angels as they are just too fragile...Now you see, the next moment you may not...
May her family get through the lost soon, may they be well and healthy.
KF
Wrote on 9 Aug 2011
1 comment:
Another sad stories, so many children pass away, not many of them sustain. If they were screen during first 3 days of life, most probably early treatment could have spare their life. Not a sad departure like this. Truely feel so sad, time to wake up to all Malaysian!
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