Monday, 25 July 2011
Our story appeared in the Star Newspaper recently covering the MPS Awareness Day at TNB Seremban on 8 July, 2011. I had another chance to give a talk, sharing Adnin & Aqilah's experience. This time it was done in Malay coz' the audience include heads of villages around Seremban and Nilai. Prior to the talk, the reporters interviewed me. I didn't realize that the story was out on 16 July, 2011 until Adnin's teacher and few other staff told her that they read her story in the paper. When my collegues saw me at the office, they also said, "I saw you in the paper...". I'm glad that the message gets across - the awareness about this rare diseases so that people like them are well taken care off.
The kids had an appointment with the spine specialist last Friday. X-ray was done and they detected scoliosis on Adnin, about 20% curved to the side and is due for another x-ray in three months time. Aqilah is free of scoliosis at this time; initially I thought Aqilah's spine is worse that Adnin's. Could it be that the alternative treatment has shown some progress on Aqilah???
Height wise, Adnin shows a very good improvement, she was 98 cm and Aqilah 92 cm using the hospital's scale. I've yet to measure them at home.
So far, they have no complains whatsoever, they look healthy and really looking forward to Ramadhan. I'll teach them to pray that they will get the enzyme replacement therapy soon so that they can grow bigger :-)
Posted by yatibahar at Monday, July 25, 2011