My husband was reading Malaysian news this morning over the Internet and came across the news about "penyakit jarang jumpa". According to the article, 1 out of 4,000 birth in Malaysia is having these diseases. Wow! That many? This is not rare anymore, isn't it? The kids' disease is one of the categories of the rare diseases, caused by metabolic disorders because of the lack of enzyme GALNS (is short).
In the article, Dr Juliana Lee admits that the treatment for this kind of diseases is very expensive. Adnin and Aqilah are lucky to be here. They are about to test the ERT for MPSIVA during the first quarter of 2009.
Actually we have met Juliana when we were there. She infact has invited us to join the rare disease group in Malaysia. When I go back, I sure will. After all, I can share the experience I have here with the UK MPS Society. It's a very strong organization and very influencial too.
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