On early morning of 22 Sep 11, we were all realy to go to airport at 7am. Called a cab the nite before and asked for a bigger taxi cause we brought 2 big bags for checked in purpose. However, when the taxi turned out that day, it was the new Proton Saga with NGV being installed. The taxi driver was quite upset to see my luggages as the caller station never mentioned about my request. It took him almost 10 minutes to put my bags into the boot, he was trying few ways to squeeze those in and tied up the boot cover with few elastic tiers. I was praying no rain fall thru out the journey, else my bags would be in "wet" trouble. My prayer was answered as it was raining quite early morning, then it stopped for us to get on taxi and reached airport. Then it started raining again 30 minutes after we reached LCCT.
However since it's the first time ever I took Air Asia, I did not expect to go onto the plane without the coverup walkway. The rain continued to drizzle that morning, only when I have left the departure gate, then I realized we would have to walk in the rain to get on to the plane. The only lucky thing is it was drizzling rather than heavy down pour. Else, I could not imagine how messy we would end up...I told myself I needed to pray for dry landing during my returned journey. But nevertheless it was an eye openning experience, no wonder Air Asia could slash the price so much...Almost all the embedded cost were removed....
Remembered that I was hoping to catch up on my sleep in the flight. The plan didn't work out at all, my kids were too excited and they didn't sleep at all. Naturally no kids can sit down for a long time without any activities. So, the 3 musketeers started going to toilet, going to the vacant seats beside the window (they were having the central seats) and they wanted so much to be able to look out from the little window. They were also having their routine of hitting and quarrel, so I just can't keep both my eyes closed. Besides, I didn't expect the seat to be so much different from MAS/Cathay. The seat was not designed for 1 to sleep I guess. I really admired my "lao gong", he could sleep in any type of style and condition, but not me. I would surely lose out if I had a chance to compete in "Amazing Race".
Soon, after 4 hours or so; the plane touched down at Tao Yuan airport. Pickup transportation had been prearranged, so we reached the hotel at about 2.45pm. There was no time different between KL and Taiwan, at leaet we did not have to go thru jet lag adjustment.
South Garden was the hotel that we were going to put up for 3 nights, it was located in Zhong Li, part of Tao Yuan. Our stomach started to complain for food but we found out the hotel was quite isolated from the busy streets, so we ended up stuffing our stomach with the afternoon tea in the coffee house. We were so happy to be in Tao Yuan as we had chance to meet up with our friends from Singapore, Kenneth and Patricia (RDSS); friends from Philipines Karen and Cynthia (PSOD); friend from Hong Kong Steven (MPS Hong Kong) that particular dinner. A group of friends from all over Asia sharing the same fight and advocating for the similar rights.
That particular night after dinner, Lee insisted of going to Zhong Li's night market for some sight seeing. We and Bavani's family (MLDA's treasurer, 2 MLDA families joined in the MPS conference this time) went to the night market at almost 9.45pm. There, we tasted the best avocado juice. We bought few more avocado's juice from different night market but none was close to this one. Rich and taste just right...If you have a chance, you must give it a try. The stall was served by 2 "ohbasang" (aunties) but I couldn't remember the name of the stall though...There were also plenty of "stinky tofu", I would like to try but my stomach just had too much thing inside and refused to work...The night market was relatively a small one but we were glad we went there cause I managed to buy Wei Ling a pair of shirt. I didn't see children clothing in any other night markets.
I was back to hotel tired and exausted...The next day, we had half day TFRD visit in front of us. So, I didn't have much time to catch up on sleep...Continued to feel a little bit of tired. The next morning, I had difficulties getting Wei Ling to take a proper breakfast; she refused to eat after putting in little food. Then she started making noise wanting to go back to sleep. The stroller came for rescue, she slept within seconds after she was up on her stroller. By about 9.30am, we (both MLDA and RDSS) were in Taipei TFRD's office. They shared with us their journey in 1999 of advocating for the rare diseases patients. They were as good as any other developed countries. They have full medication subsidy for almost all the treatable rare diseases, they even have electricity bill subsidy for those that required ventilator and any other types of life sustaining machines. And they are very advance in new born screening, they were able to screen out Pompe and started treatment for any new born within days of delivery. We listened to their presentation and had out sliva all flowing out...Starting to day dream a little bit...
Little bit of this presentation & a little bit of that presentation; we were into lunch time in a very short while. Our discussion continued to lunch time. But by 1pm, we got to rush back to South Garden as another meeting will be started at 2pm in the hotel itself. There we have the bigger sharing where PSOD and MPS Hong Kong will be joining in. I witnessed that none of the societies were able to be of what they were now without any struggles. All had their up and down. The only key thing was we must preservere in the journy no matter how tough it might be...
That night, we have the official opening of MPS conference. I must appologize that I didn't pay much attention but busy catching up with the rest of the friends from Hong Kong. Was busy checking out what Hong Kong was doing. During the opening, representative of each society or organization was invited to stage to share a few words. I saw some more organizations from Mainland China, Korea, Indonesia, Australia and Japan. The atmosphere though noisy but was great as love was filled up in the air. I guess all will have the same feeling that we are not alone after all...There are many people threading the same path at different corners of the world.
You might be wondering why there was no mention on my children. Well, MPS Taiwan had a lot of working committees and volunteers to help taking care of the children. Therefore, I had peace of mind...
On Saturday morning, the presentation of the medical papers started. I had a chance to get some facinating news especially from a lady prof of Japan. She was carrying out a study on bone marrow transplant on MPS 2 patient, it seemed the study was quite succesful. There is another presentation from Taiwan on how to include MPS into new born screening. Then there were sharing from on trial of MPS III and MPS IV. It was so wonderful to be able to know that profesionals around the world are working on solution for the LSD patients. I took every slides of the presentation but too bad my camera was lost in Taiwan....:(
However, I didn't join in the afternoon session as there was another more exciting happening. Ruth of TFRD had organized a small gathring for all Pompe patients from Taiwan, HongKong and Malaysia with the inventor Prof Y.T. Chen. It was such a warm gathering with all Pompe famalies gathered together, in fact it's the first ever time Yen Ling and Wei Ling met up with other Pompe childrens. In Malaysia, most of the children can't take up the challenge and passed away after few treatments...Each family was invited to share their Pompe journey, I shared the joy of each family in the change of each Pompe child after Myozyme treatment. I guess the happiest soul will be Prof Y.T. Chen himself as he was able to see how remarkable impacts was his invented Myozyme into each of the Pompe patients. Indeed I called it miracle drug...
That same night, we had the Gala Dinner. There were some very nice performances and on the dining table, we were offered 2 different types of tranditional homemade liqour, first is the whitis color millet wine. The other is the blackist color black glutinours rice wine. I never like liqour, but the two tasted good as they were sweet and not bitter, I personally like the black one. When I read the box, it said the liqour is good for woman...They are made up in the traditional way of the Taiwan aboligine in Sun Moon Lake. I didn't enjoy the food much as I am a roadside vegetarian, I started last year after some hearing problem on my right ear. Ended up I was served the same vegetarian food almost every meals. Can't blame the chef as they were not employed for vegetarian menus. Anyway, that did not deter me to maintain as a vegetarian.
After the dinner, we did the most craziest thing that was we decided to have a soft launch of MLDA in 2 weeks time (on 9 Oct) since Virginia (MPS Taiwan's president) will be visiting KL during that weekend. The best part was we would not be home until 2 Oct as we had extended our stay for almost a week to bring the kids around. Luckily we have Genzyme, Capital Corporate Communications and MPS Taiwan helping us out, else there was no way for us to come out with a Soft Launch in such a short preparation time. Luckily all went well.
So you see Tao Yuan was the place for us to get alliance with the other societies. We didn't have time to explore around Tao Yuan besides Zhong Li's Night Market.
Soon, we were ready to get into Taipei and start our own travelling schedule...Yeah, Taipei here we come...
Wrote by KF 11.40am 24 Oct 11
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