Our family plus my parents in law attended the RDSS organized fund raising Piano Concert in KK Woman & Children Hospital in Singapore on 3 Sep 11. It was a very rushing trip, my girls were at KL for their infusion on 2 Sep 11. Then we were at Singapore the next afternoon. Nevertheless I enjoyed the concert very much. RDSS has done a great job. All the children that appeared on stage had tried their very best to play the pieces that I believed they have practiced for some time. Though some may have showed a little bit of panicky, but they never quit and played on.
My attention was attracted to 2 of the presenters. One of them is the little girl Adelyn that is blind with a rare eye disorder. She is in her 9 or 10 years old (can't remember clearly now), she had really played whole heartedly; you will be able to sense the extra energy that she had put in on the keyboards. Despite her vision loss, her pieces were so touching. I would still give her perfect 10 even though she is not blind, there is no difference at all...
There was another great presenter, a young chap at 13 years old if I was not wrong. I was enjoying his music, but could not tell where the music comes from...It felt strange to me that I had never heard of it before. I love to listen to classical music but just haven't heard it before. It was only when he had completed both pieces and when the MC interviewed him that it was revealed both songs were actually composed by him. I just can't believe my ears...At the time of his presentation, I noted that he was a talented player but I would never expect his talent is so much more.
Then Patricia (RDSS's president) went up stage to share a note written by a recently passed away little angel, Xin Er's mother. The feeling was very heavy. But I got to salute Xin Er as she had fought her battle in a warrior way though she lost at the end of the battle. My tears run down when Pat's nieces started singing the song "Firefly" in Mandarin....A lot of mixed feeling...
At the end of the session, I got a chance to carry Chloe (Pat's daugther with Pompe) and we have taken photos too. She is left to fight on without Xin Er around but I see her strong fighting spirit and her parents too. I think she will be grow up just like Wei Ling one day. Wish her well...
There are 3 videos's that I am attaching with this blog, take a look yourself...I was trying to upload but it took hours and not done by. So, I settled for attaching the link. Once you move your moust to the text for few seconds, you will see a line appeared under the text. Click on the text again, it will direct you to the youtube page.
Little Adelyn
Little composer
Tribute to Xin Er
KF wrote on 15 Sep 11
Thursday, September 15, 2011
Wednesday, September 14, 2011
I am going to Taipei soon
For the Taiwan trip, I had no time to do any packing yet, even though this time, my entire family will be flying over to Tao Yuan. We are going to stay in Taiwan for 10+ days. We are going there to attend a MPS conference and the kids could attend their children workshop. 1 stone 2 birds. We think it's a good family outing plus it's time to get my kids to learn about what me and hubby do. There will be a gathering too for Pompe patients. This is great as my girls are yet to meet up with any Pompe patients of their age. Those that we had met are mainly babies and 1 adult. Can't wait to meet up with other Pompe families from Taiwan and Hong Kong. Out of the 10+ days, the first 4 days are mainly for official matters. The left behind 6 days are completely free of any obligations. We have booked the hotels and had our trip planned. This round, we will go to Taipei, Tai Chung and Sun Moon Lake. There are a lot more places we would like to go, but time does not allowed us to do so. We will just go there and execute the travel plan, the pace of the travelling is very much dependent on my little princess Wei Ling. I am not sure how well she will cope up, so we are going to bring her stroller after some good advise from Kwan and Wan Yu (she is from Kao Tsiung). But this Taiwan trip is not well accepted by the school as we are going to make use of 7 school days...The new principal almost refused to release my kids, but luckily it's not school exam time yet. We come back just 1 week before the exam...I have to promise her that this will be the last time that we have such a plan. In our nowadays society, result and exam is our kids's entire life...It is a pity but I don't know how to turn it around...
Why do I sound too busy until no time to pack, cause there is a "tumpang" dinner on 19 Sep 11, MLDA had gathered about 40 members and families to submit a copy of a memorandum to our beloved health minister. In the memorandum, we are voicing out the patients' treatment right even though the diseases are rare and costly. For the past 1+ week, I was cracking my head trying to put down words into the memorandum from the skeleton given by the adviser. I am not a good writer so it takes me a longer time to compose. Besides, I have to call the parents 1 by 1 to invite them to join the dinner. Hardly do I have 1 call kautim everything. I have to make at least 2 calls to get the members to join us. In certain cases, I have to talk for a long long time before I could convince the parents to come. Apparently, I am not a very good negotiator. After joining MLDA, notice that I need to polish up a lot of skills, writing, convincing, counselling, presenting and time management...Those are just some of the more critical ones, there are more skills to be mastered...Like a Chinese saying "活到老，学到老；学到老，学不了！“。 It means we have to continue learning as long as we live, and there will be no end to the learning.
KF wrote on 14 Sep 11
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