Wednesday, January 11, 2012

School Holiday Blue!

I can't recall now when I was younger, how did my mom or grandma handled me during school holiday. I only remembered that I was playing whole day and not at home, I was out in the field or in my friend's or neighbour's house. And I remembered too I was out of house after breakfast, then back to house for a while for lunch, then took a nap and back to field until late evening. In other words, I was playing whole day without any intellectual activities (doing school subjects' practices) nor was I enrolled in any talent's practices (piano playing, drawing and etc) . Those were all the happy moment....It's about playing, playing and playing. No responsibility to do anything...

Now, when it's my turn to be the mother or guardian. The environment had changed completely. It's no longer safe to let young children going out of the house and play. We got to lock ourselves up in the house most of the time. So, energetic young children like mine had no way to disperse their energy. They in turn will be playing in the house. They would bring out the toys and played and not wanted to keep as they had a so called valid excuse of "I want to play again, so I won't be keeping it until the next game"...But then they won't continue on the game, they will start to turn on the TV and stayed in front of the TV for a very long time. Then my living hall looked very much like being broken into by few burglars. Soon, I would start to make noise, then they will only push the toys to the side, things were still pretty messy.

But I can't be after them all the time, soon there will be meals time and I got to get prepared for food. Besides, school holiday is a time to travel and going back home. We would be missing from our house almost every weekend. So, after almost 2 months, my house looked horrible. I felt so bad if any friends come to visit me. But at the same time, I was having headache don't know how to put things back cause that's not what I was good at. It also explained why my children were messy most of the time.

So, whenever school holiday come; I feel like going off for a long break. But too bad, my children are still too young to take care of themselves and my hubby need to work. And I don't have the heart to ask both my mom or my mom in law to take care of the children. They are too old to be given the responsibility. But my mom in law was very kind to offer help whenever I need. My son being the most energetic kid was depressed too in a way as he would be constantly asking for his basketball game but I don't have time to bring him out. So, he will start making all sort of funny actions to agitate me. So much so that I got to get my mom in law to look after him for 1 week in Rembau.

Now, I am on my way to be back to normal. But it shall not be long as Chinse New Year is round the corner....

wrote on 11 Jan 12

Monday, October 24, 2011

Taiwan Trip - Tao Yuan

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

Wednesday, October 12, 2011

Before Trip to Taiwan

It had been a long time that I failed to write down anything for almost a month, felt a little bit of guity but was really out of time...

Before going to Taiwan, MLDA was invited to a dinner orginized by Persatuan Peniaga-peniaga Kecil at Min Kok Restaurant on 19 Sep 11, just 3 days before we flied off to Taiwan. We were hoping to meet up with Dato' Sri Liow Tiong Lai as he was the invited VIP for the dinner.

We had our 1st committee meeting in Baharudin/Yati's house in USJ end Aug on this. And we also had our 1st Skype conferance call a week before the dinner to make sure things are on the right track. We felt the most important thing will be the memorandum to Ministry of Health. The memo write up only got started in the early Sep after the first meeting. We were hoping to be able to pass Dato Sri' Liow during the event. But unfortunately YB could not make it in the very last minute, nevertheless Datuk Yeow Chai Thiam had received the memorandum on his behalf and promised to pass on the copy to Dato' Sri Liow. This event was out in the 3 major Chinese Presses China Daily, Sin Chew and Nan Yang in the local news section. Besides, the organizer was very kind to offer help to get us donation during the night. And CSL too donated 10 cell phones, the sales of the proceed will be the donation for the night. We got RM6866 in total, thanks to all that came forwards to help us boost the donation.

The memorandum really took a lot of my time as I just wanted to make sure that it is short but at the same time long enough to tell Dato Sri' Liow about LSD patients request. And it should not sound too pushy, nor shall it be too flat of a tone. It must have some desperate feeling in it...So ended up, I was looking into the memo over and over again... I didn't really have the heart to do my Taiwan trip packing and moreover. To add on to my last minute job list, my girls' infusion fell on 20 Sep, the next day after the dinner. It was supposed to be on 16 Sep, but it's our Malaysia Day;  the doctors did not allow the hospital to have any infusion during holidays or weekend. However, they can't cope with too many patients on 15 Sep. We had no choice but to accept on either 19/20 Sep, on the following week. 19 Sep was totally out as it clashed with the dinner. 

Ended up, every preparation was rushed on 21 Sep, a day before the trip. I went to bank to bank in the donation. I went to bank to withdraw money to be changed into Taiwan NT$. I went to the souvenier shop to pick up souveniers for the Taiwan MPS and TFRD. I must make sure no dirty laundry will be left in the house as we would be 10 days away. I must made sure no perishable items were left in the fridge, got to start to distribute things to my neighbours. Towards the evening, then only I was settled for the packing. Then I got to think of how to make sure enough clothing for all and not exceeding the checked weight. I regreted not asking for a bigger checked in weight when coming back from Taiwan. A total of 40 kgs was not enough, therefore I got to reduce my clothings. It was into early morning on 22 Sep that I was finally satisfied with all the packing. I was tired to death...My mind was looking forwards to the 4 hours fligt hoping to be able to catch up on sleep.

Did my plan work out? We will see...

Thursday, September 15, 2011

A Great Fund Raising Piano Concert From Rare Disorders Society Singapore

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

Wednesday, September 14, 2011

I am going to Taipei soon

If I didn't meet up with Kwee Ming today, I probably will still delay the write up of this post; cause my house is in a big mess...He told me he was following my blog, that gave me encouragement to write one today...It's like almost 3 weeks since I last wrote one...As a housewife, I scared most of school holiday...No free and leisure time at all. I need a long long time to regain my energy after any holiday break.

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