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
Monday, October 24, 2011
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...
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
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
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
Saturday, August 27, 2011
我的婆婆妈妈,我的守护神!
这一路走过来，有两位我一定要谢谢的贵人；那就是我的家婆和我的妈妈。如果没有他们我想现在的我不知会是怎么样？
每一次她们都在我有需要的时候伸出双手，扶了我一把。小时候的玮玲是医院的长客，久不久就来一个肺炎，间中或来一个大泻不止。搞到我差一点精神分裂。。。现在回想起也不知自己是怎么样走过来。只有惨惨惨的回忆。。。
她们两位老人家总是我一个电话过去，下一刻（通常是家婆，因她比较急性而且也住得比较近）或第二天（我妈都是安顿好老爸，然后自己撘巴士来）就到我家帮我照顾两个大东瓜。让我在医院陪伴小瓜时没有后顾之忧。
我的妈妈甚至在我生了老二及老三后（这是老爸也被逼跟过来），陪了我老半年才安心回老家。虽然她还有老爸都不太适应我家的环境，但都硬硬撑了下来。我的三餐都是她老人家在张罗，想想还真是有点惭愧。但同时也是超幸福的。。。
而家婆总是在每两个星期五我带两位公主去KL放药时来我家报到，帮我看看我的王子。从来没有听过她言累。。。
虽然今天不是母亲节，但还是想谢谢她们无私的奉献及不求回报的付出。
妈！真的有您们真好，但愿您们都能身体健健康康，每一天都能安枕无忧。。。
建芬 于二零一一年八月二七日
她们两位老人家总是我一个电话过去，下一刻（通常是家婆，因她比较急性而且也住得比较近）或第二天（我妈都是安顿好老爸，然后自己撘巴士来）就到我家帮我照顾两个大东瓜。让我在医院陪伴小瓜时没有后顾之忧。
我的妈妈甚至在我生了老二及老三后（这是老爸也被逼跟过来），陪了我老半年才安心回老家。虽然她还有老爸都不太适应我家的环境，但都硬硬撑了下来。我的三餐都是她老人家在张罗，想想还真是有点惭愧。但同时也是超幸福的。。。
而家婆总是在每两个星期五我带两位公主去KL放药时来我家报到，帮我看看我的王子。从来没有听过她言累。。。
虽然今天不是母亲节，但还是想谢谢她们无私的奉献及不求回报的付出。
妈！真的有您们真好，但愿您们都能身体健健康康，每一天都能安枕无忧。。。
建芬 于二零一一年八月二七日
I Decided To Get A Portable Hard Disk...
My old Toshiba notebook is running slower nowadays, unlike the earlier day when my sister passed me. It used to run pretty fast. But not now...So, I have brought it to see my friend in S2 that knows how to fix up the notebook. I thought he would be telling me that my PC was too old and needed to be replaced. Then I could have a good excuse to replace my notebook. But no, that's not what he told me. Instead he told me the notebook was ok, only thing that the storage was not. Almost 90% of the capacity (miserably 60G) had been used up, therefore there was not much resources for the PC to run.
So, instead of getting a new notebook for myself. I got myself a 500G portable hardisk, that is a cheaper solution. I had planned to transfer all my working files into the new hardisk as those files were the ones that took up most of the spaces.
After buying the new hardisk, I started with the file transfer. While I was doing that, I found so many old photos that I had almost forgotten about their existence. There were some videos too especially those that had been taken while the kids were much younger. I was like going back into time, all the old memories started to resurface after so long...Things were no longer in my normal storage, suddenly appear out of nowhere. No wonder we need to take photos and videos cause it is really the best way of keeping the progress of one's life. At the same time, all the emotions embedded with the memories started to get agitated too. There are sweet, bitter and neutral feeling behind each photo and video. But when I take a new look at it now, I noticed I could be at ease with the emotional roller coaster that I once in...
I think it's a good practice to revisit the old photos once in a while, then we had a chance to do some reflection. I do not know for others, at least for me I think it's a good way to consolidate all the loose thoughts in my mind through refreshing of the old memories. At the end of the day, I became more settled....
KF
Wrote on 27 Aug 11
Side note:
This blog is supposed to be published earlier. But I have overdone my file transfer so much so that I have accidently removed some of the system files, so my notebook got too upset and refused to run at all...Now, it's in the hand of my friend. I don't know when I am going to get it back but I hope it will not be too long cause I missed it so much...
So, instead of getting a new notebook for myself. I got myself a 500G portable hardisk, that is a cheaper solution. I had planned to transfer all my working files into the new hardisk as those files were the ones that took up most of the spaces.
After buying the new hardisk, I started with the file transfer. While I was doing that, I found so many old photos that I had almost forgotten about their existence. There were some videos too especially those that had been taken while the kids were much younger. I was like going back into time, all the old memories started to resurface after so long...Things were no longer in my normal storage, suddenly appear out of nowhere. No wonder we need to take photos and videos cause it is really the best way of keeping the progress of one's life. At the same time, all the emotions embedded with the memories started to get agitated too. There are sweet, bitter and neutral feeling behind each photo and video. But when I take a new look at it now, I noticed I could be at ease with the emotional roller coaster that I once in...
I think it's a good practice to revisit the old photos once in a while, then we had a chance to do some reflection. I do not know for others, at least for me I think it's a good way to consolidate all the loose thoughts in my mind through refreshing of the old memories. At the end of the day, I became more settled....
KF
Wrote on 27 Aug 11
Side note:
This blog is supposed to be published earlier. But I have overdone my file transfer so much so that I have accidently removed some of the system files, so my notebook got too upset and refused to run at all...Now, it's in the hand of my friend. I don't know when I am going to get it back but I hope it will not be too long cause I missed it so much...
Saturday, August 20, 2011
MPS II Brothers From Mersing
Even before I joined in Malaysia Lysosomal Diseases Association (MLDA), I had a thought of writing down the story of different patients I met in the hospital. A lot of them were sad stories and some may need help physically or financially. But I didn't have the confident that I could write a beautiful story then. Still now my English command was still the same yet I realized if I could share with you what I saw, then you had a chance to learn about Lysosomal Storage Diseases (LSD) diseases and how it affect the patients and patients' families. To me, it's like having a budget free awareness program...:)
Khairul Nazmi Azizi (called Nazmi later) and Khairul Muiz Muhaimi (called Muiz later) were borned to be normal and healthy as any other kids. This storyline mainly covered Nazmi as Muiz is still very young at 2 year old, so we were yet to see more changes on him. They were borned into a family of 4 children (3 boys and 1 girl) with Nazmi being the eldest and Muiz being the youngest. Although only their father was working, everything looked fine and their mom Puan Sunarti had no problem handling the little resources. Nazmi was borned in 1999, he was a chubby and happy baby, no one would ever suspect such a healthy baby would be down with MPS II one day. The disease started to progress very slowly, the changes were all very subtle initially. What Puan Sunarti noticed at the earlier stage around 2 year old that Nazmi has a different palm than the other kids. Both palms were very meaty and rounded. Other than that, everything seemed the same. The other thing she noticed was Nazmi's Mongolian marks at his back took a much longer time to disappear, it was until he was 5 to 6 year old that it finally went off. So, Puan Sunarti started asking different doctors about the rounded palms that Nazmi had. All the answers she got were quite standard that was Nazmi was chubby, thus it showed on the palms too. A logical answer.
Life went on until Nazmi was 6 year old in the year of 2005. That time, they were still staying in one of the small island outside of Mersing. Nazmi had a terrible flu during that year and happened to see a visiting doctor from Mersing Hospital. After the inspection, the doctor told Puan Sunarti that he suspected something wrong with Nazmi's heart as the beating was different from a normal child. Immediately Nazmi was referred to Mersing Hospital for futher check up. From Mersing, he was referred to Johor Baru Hospital in a short while. But the diagnosis did not come out immediatly after the first visit, it was until few rounds of visit that JB's cardiologist finally confirmed that Nazmi had cardiac failure and needed an urgent surgery, that was sometime in Aug 2006. He was referred to Institute Jantung Negara (IJN) right away. This time round too, Nazmi whole body started swelling and skin were peeling off all over. Besides, his height growth started to get stunted and his face became bigger with the forehead bone protuding out little by little. And his nose bone becoming flater and there were numerous bone growth around the skull bone. So, the skull became uneven if you touched the back of his head.
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| Nazmi less than 1 year old just started walking, his palms were still normal then. |
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| After heart surgery at 8 year old, noticed his curved palms or known as claw hands |
It was until Feb 2007 that he had the slot for the surgery. After the surgery, Puan Sunarti met up with one posting doctor from JB in IJN during one of the post surgery check up. This time, finally a doctor had answered Puan Sunarti query about the funny looking of Nazmi's palms. According to the doctor, Nazmi might have underlying genetic/metabolic problem causing his heart to show some sign of failure again. He was finally refered to a geneticist some time in Feb 2008. In Sep 2008, 7 months later Nazmi was diagnosed with MPS II. Everything about Nazmi little little physical changes were answered as MPS II is a kind of disease that affect the developement of the bones. They typically had stunted growth and stiff joints.
But when the younger brother Muiz growing up more and more like Nazmi, Puan Sunarti sensed something was wrong. When the doctor found out about Muiz condition, he was asked to go to Hospital Kuala Lumpur (HKL) for further investigation. Before the doctor came back with the test result, Puan Sunarti knew Muiz had the same fate as her brother cause bones started swelling up on the skull and his hands started to becoming more and more curvy. True enough in May 2010, Muiz too was diagnosed with MPS II...A big blow to the Mersing family.
Luckily, after waiting for almost 3 years for treatment. Nazmi started his treatment life in Feb 2011. The family was overwhelmed but at the same time, they were hoping Muiz treatment can start at the same time too. But due to budget limitation, the money was only good for 1 MPS II patient. They had no choice but to wait for more allocations into ERT treatment fund. This is the sad part of the story that allocations were never enough, the less fortunate one would have to wait. Waiting and getting anxious seemed to be the only thing can be done at this moment. Getting anxious is inevitable as this disease may have brain involvement as it gets worse. As soon as brain is involved, all treatment will be stopped regardless how good the body may be responding to the drugs. So, imagine if you are the parents of a child of MPS II, what sort of life that you might be going through?
My hope to share with you the story is that more will be awared of these less fortunate one and supported us in the fight for the equal treatment right of every citizen in Malaysia regarless of the medical cost.
Story and Photos Shared by Puan Sunarti
Story compiled and written by KF on 20 Aug 11
Video by KF and Lee
Note on MPS II
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MPS II is a X-linked recessive whereby only male or boy get affected and female or girl will be the carrier. Therefore, X-linked recessive diseases are typically more common than the normal autosomal recessive. The problem with MPS II was the body can not break down mucopolysaccharidosis or known as glycosaminoglycans (GAG). In Hunter syndrome, GAG builds up in cells throughout the body due to a deficiency or absence of the enzyme iduronate-2-sulfatase (I2S). This buildup interferes with the way certain cells and organs in the body function and leads to a number of serious symptoms. As the buildup of GAG continues throughout the cells of the body, signs of Hunter syndrome become more visible. Physical manifestations for some people with Hunter syndrome include distinct facial features and large head. In some cases of Hunter syndrome, central nervous system involvement leads to developmental delays and nervous system problems. Not all people with Hunter syndrome are affected by the disease in exactly the same way, and the rate of symptom progression varies widely. However, Hunter syndrome is always severe, progressive, and life-limiting.
Info taken from Wikipedia
Thursday, August 11, 2011
A Great Fighter Mom
I met with Puan Sunarti in HKL early this year, couldn't remember the exact date now. From did not each other, we had become good friends. She has 2 MPS II (Hunter) sons. MPS II patients will not grow tall, their height will stay around 100-120cm even when they grow up. Besides, they have stiff joints, weak vision and poor hearing. For the less fortunate one the condition will extend to their brain. Gradually they will have lost of mobility, lost of speech, lost of capability to take care of themselves. That happened to a few and I will share with you their stories later. The elder 12 year old son Khairul Nazmi Azizi (called Nazmi later) is under treatment but the youngest 2 year old son Khairul Muiz Muhaimi (called Muiz later) is not.
We were destined to meet up with each other. Why? Cause she only came to HKL every alternate week even though Nazmi needs weekly infusion. The other week, her hubby will be coming. And out of 5 working days, she comes to hospital on Friday the same day with me. So, with so much possibilites we still meet up with each other. That is what I call "有缘人" in Chinese.
I was really moved by her courage to fight on. She had become a housewife after getting married. They stay in Mersing, Johor; a small town that is close to Pulau Tioman. Despite the distance of her house to HKL, they had not missed any infusion yet even though it was a weekly affair. Despite the financial burden that her more than half of her family income would have to be spent on the travelling which is about RM800 a month. But I had seen other patients skipping the medication due to certain circumstances but not her.
What more, she did not shy away from letting others know about her family story. She allowed us to video her sons while waiting for the bus to go back to Mersing. She knew very well that she will need more people to know in order to save Muiz.
Last Friday in HKL I asked her if she was ok to let me put up their story in MLDA website. She welcomed the idea without any hesitation. So my interview started. In the process of interviewing, I was further amazed by her. When I asked her the growing up stories about Nazmi, she remembered them well. But what amazed me more is her orderliness, she was the first mom that I have seen brought all the important documents and photos with her. Interviewing job had become a breeze. During the interview, she started showing me photos of Nazmi when he was newly born, started to walk, becoming brother, after heart operation and recently. Besides, all the medical examination booklets, medical reports were so well kept in the file. And the best part was, she brought them with her whenever she goes to the hospital even though she was travelling by bus. No wonder she was having so many bags with her...I asked her why, she told me she did not know what to tell the doctors but she did know if she brought everything, the doctors would understand better. She really knows what to do to help her sons.
Not only that, she had tried once to walk from Titiwangsa Komuter station all the way to HKL just to see if she can save the taxi fare. Later that she found that it was not a good idea to walk with big bags and 2 sons, Muiz had to walk all the way back cause she had no more hands to carry him. Pure thing...She would visit the welfare office in HKL to get the fare relief in every visit, even though it was not full reimbursement. She would keep looking for funding to relief the financial burden and never had the "malu" thought. She knows that she has 4 children welfare to be taken care of.
She had also reflected to doctors many many times to let Nazmi get treatment in JB instead of KL. Her never give up spirit had made the doctor to grant her the wish. Finally the doctor agreed to do so. Soon Nazmi will get treatment in JB.
I truly salute her for her courage, for her non giving up spirit. Way to go, Puan Sunarti.
KF
Wrote on 11 Aug 2011
We were destined to meet up with each other. Why? Cause she only came to HKL every alternate week even though Nazmi needs weekly infusion. The other week, her hubby will be coming. And out of 5 working days, she comes to hospital on Friday the same day with me. So, with so much possibilites we still meet up with each other. That is what I call "有缘人" in Chinese.
I was really moved by her courage to fight on. She had become a housewife after getting married. They stay in Mersing, Johor; a small town that is close to Pulau Tioman. Despite the distance of her house to HKL, they had not missed any infusion yet even though it was a weekly affair. Despite the financial burden that her more than half of her family income would have to be spent on the travelling which is about RM800 a month. But I had seen other patients skipping the medication due to certain circumstances but not her.
What more, she did not shy away from letting others know about her family story. She allowed us to video her sons while waiting for the bus to go back to Mersing. She knew very well that she will need more people to know in order to save Muiz.
Last Friday in HKL I asked her if she was ok to let me put up their story in MLDA website. She welcomed the idea without any hesitation. So my interview started. In the process of interviewing, I was further amazed by her. When I asked her the growing up stories about Nazmi, she remembered them well. But what amazed me more is her orderliness, she was the first mom that I have seen brought all the important documents and photos with her. Interviewing job had become a breeze. During the interview, she started showing me photos of Nazmi when he was newly born, started to walk, becoming brother, after heart operation and recently. Besides, all the medical examination booklets, medical reports were so well kept in the file. And the best part was, she brought them with her whenever she goes to the hospital even though she was travelling by bus. No wonder she was having so many bags with her...I asked her why, she told me she did not know what to tell the doctors but she did know if she brought everything, the doctors would understand better. She really knows what to do to help her sons.
Not only that, she had tried once to walk from Titiwangsa Komuter station all the way to HKL just to see if she can save the taxi fare. Later that she found that it was not a good idea to walk with big bags and 2 sons, Muiz had to walk all the way back cause she had no more hands to carry him. Pure thing...She would visit the welfare office in HKL to get the fare relief in every visit, even though it was not full reimbursement. She would keep looking for funding to relief the financial burden and never had the "malu" thought. She knows that she has 4 children welfare to be taken care of.
She had also reflected to doctors many many times to let Nazmi get treatment in JB instead of KL. Her never give up spirit had made the doctor to grant her the wish. Finally the doctor agreed to do so. Soon Nazmi will get treatment in JB.
I truly salute her for her courage, for her non giving up spirit. Way to go, Puan Sunarti.
KF
Wrote on 11 Aug 2011
Wednesday, August 10, 2011
All Went Well Finally
Oh I finally presented my Pompe story in front of all the std 5 students. There were around 50 of them from 2 different classes. Finally all went well, what a relief...
But I was sweating initially, why? Cause I got to change into the 3rd notebook to prepare for the presentation. The first school's notebook seemed to have the screen up, the voice up but somehow it can't detect my pendrive. Unfortunately there is the only place that I had saved my powerpoint file...So, I quickly changed into my own notebook (back up). But this time, things got worse. There was no voice and my notebook screen went off even though the projector was shooting well. Being an IT nerd, I could not believe that things were happening in this very challenging way. At the same time, the students had started filled up the hall, I started to get a little panic...Luckily another teacher Lim's notebook came to bail me out of this awkard situation. Her notebook had the video output, had the voice and could detect the pendrive...Wuuh...it was so closed that my nerves were breaking down.
I didn't touch much on MLDA as they were students, but I did give each one of them a pamplet of the society as asked them to go back and read to find out what the society was all about. I hope they would follow what I say and share with their parents too...
I ran the short powerpoint file showing where about the lysosome and told them what happened at the absence of GAA enzyme. That glycogen got to build up in all the muscle structures including the liver, spleen, heart and lungs. So, a lot of the organs would get swollen up and the skeletal muscles were wasted. When it got worse, life would be spared. Also, showed them some other patients that were mainly MPS.
Then I followed up with a short video clip of Pompe disease about my family plus 2 others families that was produced in 2007. In the video I chose to speak in English hoping more would understand. But the teachers told me the students would have difficulties to understand. For the students, I had to translalate most of the written description into Chinese. From time to time, I would stop the video and asked them questions. They were responding well. I was glad that most of them were keen to find out more.
At the end of the session I shared with them what Yen Ling and Wei Ling had gone through for the past 5+ years. That we had to go to HKL every 2 weeks without fail. That they were poked for line setting every time. That they had to stay in the bed for a continous 4 hours for the infusion. So, I told them too that I hope they could be Yen Ling good friends to help me take care of her in the school. I really hope that after what I had shared with them, they learnt something and one day they would come out to help this less fortunate group of people.
And guess what at the end of the presentation. I was given 2 boxes of biscuits as the token of appreciation. So, I told my hubby perhaps we should go to San Min more often...:)
KF
Wrote on 10 Aug 2011 evening
But I was sweating initially, why? Cause I got to change into the 3rd notebook to prepare for the presentation. The first school's notebook seemed to have the screen up, the voice up but somehow it can't detect my pendrive. Unfortunately there is the only place that I had saved my powerpoint file...So, I quickly changed into my own notebook (back up). But this time, things got worse. There was no voice and my notebook screen went off even though the projector was shooting well. Being an IT nerd, I could not believe that things were happening in this very challenging way. At the same time, the students had started filled up the hall, I started to get a little panic...Luckily another teacher Lim's notebook came to bail me out of this awkard situation. Her notebook had the video output, had the voice and could detect the pendrive...Wuuh...it was so closed that my nerves were breaking down.
I didn't touch much on MLDA as they were students, but I did give each one of them a pamplet of the society as asked them to go back and read to find out what the society was all about. I hope they would follow what I say and share with their parents too...
I ran the short powerpoint file showing where about the lysosome and told them what happened at the absence of GAA enzyme. That glycogen got to build up in all the muscle structures including the liver, spleen, heart and lungs. So, a lot of the organs would get swollen up and the skeletal muscles were wasted. When it got worse, life would be spared. Also, showed them some other patients that were mainly MPS.
Then I followed up with a short video clip of Pompe disease about my family plus 2 others families that was produced in 2007. In the video I chose to speak in English hoping more would understand. But the teachers told me the students would have difficulties to understand. For the students, I had to translalate most of the written description into Chinese. From time to time, I would stop the video and asked them questions. They were responding well. I was glad that most of them were keen to find out more.
At the end of the session I shared with them what Yen Ling and Wei Ling had gone through for the past 5+ years. That we had to go to HKL every 2 weeks without fail. That they were poked for line setting every time. That they had to stay in the bed for a continous 4 hours for the infusion. So, I told them too that I hope they could be Yen Ling good friends to help me take care of her in the school. I really hope that after what I had shared with them, they learnt something and one day they would come out to help this less fortunate group of people.
And guess what at the end of the presentation. I was given 2 boxes of biscuits as the token of appreciation. So, I told my hubby perhaps we should go to San Min more often...:)
KF
Wrote on 10 Aug 2011 evening
Tomorrow Have A Presentation On Pompe For Yen Ling's Classmates
Oh, I am getting nervous...I can write though not very good but talking is a totally different thing for me. An area that needs improvement. Something that I am not good at all...
My hubby is supposed to present but was called to a meeting by his boss last minute. So, I got to replace him. Even though not ready but still need to do it. Like the Cantonse saying "Ting Ygan Siong". What to do...
The reason why we want to share the story of 'Pompe' with Yen Ling's classmates is mainly she is very new to her current school San Min. She was transferred in mid April, just few months back. So, most of her classmates do not understand why she acted differently. Though she had recovered a lot but still she would never be comparable to any other normal kids. Her movement and speech was slightly impaired. The fact that the doctor warned me few years back and she was classified as physical "OKU (Orang Kurang Upaya)". So, she ended up being bullied (in speech) by few...She was extremely upset and wanted to go back to her old school. We brought her case to deputy HM, after some discussion we thought it might be time for us to start our awareness program at the school level. Then at least Yen Ling's schoolmates will have a chance to be exposed to this particular rare disease. A topic that I am sure they had never been exposed to. And hopefully with some knowledge, there will be more understanding/caring and less/no abuse...
Today I was busy going thru youtube to see if there was any good clip on Pompe disease that I could share with the kids to make them understand what Yen Ling had gone through. After many hours search, with the help of my hubby; we manage to find one that was pretty good. Like to share with you here.
http://www.youtube.com/watch?v=BDlKFFpCnRo
Tomorrow I will treat it as the learning ground for me to sharpen my presetation skill. I hope I will tune down my level to suit the kids. And hopefully at the end of the day, they learn something. I guess that is the more important. I will give it my best try.
KF
Wrote on 10 Aug 11 Early morning
My hubby is supposed to present but was called to a meeting by his boss last minute. So, I got to replace him. Even though not ready but still need to do it. Like the Cantonse saying "Ting Ygan Siong". What to do...
The reason why we want to share the story of 'Pompe' with Yen Ling's classmates is mainly she is very new to her current school San Min. She was transferred in mid April, just few months back. So, most of her classmates do not understand why she acted differently. Though she had recovered a lot but still she would never be comparable to any other normal kids. Her movement and speech was slightly impaired. The fact that the doctor warned me few years back and she was classified as physical "OKU (Orang Kurang Upaya)". So, she ended up being bullied (in speech) by few...She was extremely upset and wanted to go back to her old school. We brought her case to deputy HM, after some discussion we thought it might be time for us to start our awareness program at the school level. Then at least Yen Ling's schoolmates will have a chance to be exposed to this particular rare disease. A topic that I am sure they had never been exposed to. And hopefully with some knowledge, there will be more understanding/caring and less/no abuse...
Today I was busy going thru youtube to see if there was any good clip on Pompe disease that I could share with the kids to make them understand what Yen Ling had gone through. After many hours search, with the help of my hubby; we manage to find one that was pretty good. Like to share with you here.
http://www.youtube.com/watch?v=BDlKFFpCnRo
Tomorrow I will treat it as the learning ground for me to sharpen my presetation skill. I hope I will tune down my level to suit the kids. And hopefully at the end of the day, they learn something. I guess that is the more important. I will give it my best try.
KF
Wrote on 10 Aug 11 Early morning
Tuesday, August 9, 2011
Another Angel Bid Farewell
Just got the news from Patricia through FB that a Malaysia Pompe baby girl Xin Er passed away 2 days ago in Singapore. Even though she had started getting Myozyme for some time in Singapore but she did not get well after the infusions. Another case of late treatment...So sad...
I didn't have a chance to meet up with her yet, I thought I may see her this coming 3 Sep 11 at RDSS Fund Raising Piano Concert. But she chose to leave early. Guess it's too painful to go on the difficult journey...
She is supposed to come back to Malaysia for treatment but her applicatin process is still not completed yet after few months. This is one the areas that MLDA might be able to work out with Health Ministry. We need a better and faster approval system for all the special little angels as they are just too fragile...Now you see, the next moment you may not...
May her family get through the lost soon, may they be well and healthy.
KF
Wrote on 9 Aug 2011
I didn't have a chance to meet up with her yet, I thought I may see her this coming 3 Sep 11 at RDSS Fund Raising Piano Concert. But she chose to leave early. Guess it's too painful to go on the difficult journey...
She is supposed to come back to Malaysia for treatment but her applicatin process is still not completed yet after few months. This is one the areas that MLDA might be able to work out with Health Ministry. We need a better and faster approval system for all the special little angels as they are just too fragile...Now you see, the next moment you may not...
May her family get through the lost soon, may they be well and healthy.
KF
Wrote on 9 Aug 2011
I Found Make A Wish Foundation
In MLDA (Malaysia Lysosomal Diseases Association), I see 4 groups of children.
The first one is the luckiest one that they are diagnosed and treated. I am extremely grateful that my girls belong to this category. The patients could be having Pompe, MPS 1, MPS 2, MPS 6 or Gaucher...
The second one is still considered lucky that they are waiting to be treated. Due to the continuous increasing amount of patients, the ERT (Enzyme Replacement Therapy) fund always run short. So, they got to wait while waiting for more budget to come in. The patients could be anyone of the above disorders but MPS 2 top the list as it is x-linked recessive. The mother will always be the carrier and every son has a 50% of getting the problem.
The third group are the patients diagnosed with certain disorders but condition are stable and no brain involvement. However their drug is in trial stage. They have to wait for the drug to be released in the market before they can be treated. MPS 4A belongs to this category.
Now, the forth one is the one I had in mind for allowing them or the family to make a wish. This group of children are either diagnosed but too late to be treated as their brain was injured. Or there is no treatment avaiable in the market. Some of the MPS 1, MPS 2 and Gaucher can end up here if they do not have early treatment. And there are MPS 3 and MPS 7 that do not have any treatment yet.
To me, there are someting MLDA can do to help out in terms of fighting for their treatment if the patients come from the first 3 of the categories. But for the forth group, nothing much seem can be done. But I strongly felt the desparate feeling of the parents. They have plan for their children but sometimes may have financial constraint. So, I was thinking to myself if only they are granted a wish to do just 1 thing for their beloved child; may be they would not feel too bad after the departure of their children. Then I remembered seeing a foundation granting wish for the terminal ill children. Since then, I was trying to look for the foundation thru friends but failed to do so...Sad sad sad...
But today is really my lucky day. Half way while trying to get some info to fill up the web of MLDA, I found the make a wish foundation by accident. Hooray!!! (皇天不负有心人) I must bring this up to the upcoming meeting. I must find ways to convince the rest of the committee to turn on this particular program in MLDA...I have faith that others will agree with me...:)
KF
Wrote on 9 Aug 2011
The first one is the luckiest one that they are diagnosed and treated. I am extremely grateful that my girls belong to this category. The patients could be having Pompe, MPS 1, MPS 2, MPS 6 or Gaucher...
The second one is still considered lucky that they are waiting to be treated. Due to the continuous increasing amount of patients, the ERT (Enzyme Replacement Therapy) fund always run short. So, they got to wait while waiting for more budget to come in. The patients could be anyone of the above disorders but MPS 2 top the list as it is x-linked recessive. The mother will always be the carrier and every son has a 50% of getting the problem.
The third group are the patients diagnosed with certain disorders but condition are stable and no brain involvement. However their drug is in trial stage. They have to wait for the drug to be released in the market before they can be treated. MPS 4A belongs to this category.
Now, the forth one is the one I had in mind for allowing them or the family to make a wish. This group of children are either diagnosed but too late to be treated as their brain was injured. Or there is no treatment avaiable in the market. Some of the MPS 1, MPS 2 and Gaucher can end up here if they do not have early treatment. And there are MPS 3 and MPS 7 that do not have any treatment yet.
To me, there are someting MLDA can do to help out in terms of fighting for their treatment if the patients come from the first 3 of the categories. But for the forth group, nothing much seem can be done. But I strongly felt the desparate feeling of the parents. They have plan for their children but sometimes may have financial constraint. So, I was thinking to myself if only they are granted a wish to do just 1 thing for their beloved child; may be they would not feel too bad after the departure of their children. Then I remembered seeing a foundation granting wish for the terminal ill children. Since then, I was trying to look for the foundation thru friends but failed to do so...Sad sad sad...
But today is really my lucky day. Half way while trying to get some info to fill up the web of MLDA, I found the make a wish foundation by accident. Hooray!!! (皇天不负有心人) I must bring this up to the upcoming meeting. I must find ways to convince the rest of the committee to turn on this particular program in MLDA...I have faith that others will agree with me...:)
KF
Wrote on 9 Aug 2011
Monday, August 8, 2011
One Day Without Streamyx
My streamyx was down on 6 Aug noon. When streamyx was line down, I would say very 'kan koh' or difficult. There were few emails that I need to reply but can't do anything. There was this flight that I would like to book but could not do anything....There was few uploads that my hubby would like to do but could not do anything...For the rest of the day, I would try to turn on my modem and hope for miracle but nothing happened...Suddenly I became a switching lady. When I called up TM service line, the auto answering machine would keep on asking me to wait as all the customer service officers were busy. So, I held on for 10 minutes then stopped. Repeated the process for 3 times and finally gave up. That night my hubby was so 'pekchit' or desperate and decided to turn his Blackberry into a modem but his Curve did not have 3G, a few images took him 2 hours to upload...A used to be 10 minutes job taking up so much extra time...
I waited on the next afternoon to call. This time, the called got through immediately. But as soon as I had finsihed on the fault reporting. Was told they needed at least 24 hours to restore the line. So, I was very 'am tui' or upset as due to the inefficiency of TM "100" helpline, I got to wait for one more day...
So, Sunday evening I could no longer take it anymore. I told my hubby I got to find the backup internet service and wanted to buy a prepaid mobile broadband. We went to Tesco Seremban to shop for one. After asking around for the charges and the services, I decided to take up U-Mobile even though this was not a popular mobile service provider in Seremban. I would have taken up Digi if only my house got the line signal. But recently Digi line was not stable in my house. outside was fine though. I did not have any intention to donate my blood to mosquito though...
But to register a line needed 2 hours or so, while waiting my hubby brought me to New Town Coffee so that we could clear up our emails. Suddenly I realized I was kind of addicted to internet services, it has become as important as a mobile phone though lower priority. I had been relied on the internet to get most of my info and staying connected to my distance friends. When it was out for a while, I had problem adjusting to it. I had just added to one more attachment in my life...
Luckily things were back to normal now. My stremyx is back and I still got 29 days of U-Mobile service. From this experience, I learnt 2 things. First, there is one new area of me that I have to learn how to let go...Second, sometimes bad luck may not be bad after all. Without Streamyx had forced me to explore other options of internet. And I found out that mobile broadband was equally good or even slightly better than streamyx...A blessing in disguise.
KF
Wrote on 8 Aug 2011
I waited on the next afternoon to call. This time, the called got through immediately. But as soon as I had finsihed on the fault reporting. Was told they needed at least 24 hours to restore the line. So, I was very 'am tui' or upset as due to the inefficiency of TM "100" helpline, I got to wait for one more day...
So, Sunday evening I could no longer take it anymore. I told my hubby I got to find the backup internet service and wanted to buy a prepaid mobile broadband. We went to Tesco Seremban to shop for one. After asking around for the charges and the services, I decided to take up U-Mobile even though this was not a popular mobile service provider in Seremban. I would have taken up Digi if only my house got the line signal. But recently Digi line was not stable in my house. outside was fine though. I did not have any intention to donate my blood to mosquito though...
But to register a line needed 2 hours or so, while waiting my hubby brought me to New Town Coffee so that we could clear up our emails. Suddenly I realized I was kind of addicted to internet services, it has become as important as a mobile phone though lower priority. I had been relied on the internet to get most of my info and staying connected to my distance friends. When it was out for a while, I had problem adjusting to it. I had just added to one more attachment in my life...
Luckily things were back to normal now. My stremyx is back and I still got 29 days of U-Mobile service. From this experience, I learnt 2 things. First, there is one new area of me that I have to learn how to let go...Second, sometimes bad luck may not be bad after all. Without Streamyx had forced me to explore other options of internet. And I found out that mobile broadband was equally good or even slightly better than streamyx...A blessing in disguise.
KF
Wrote on 8 Aug 2011
Saturday, August 6, 2011
Food War
I had been very health conscious ever since I was a child. This habit of mine still carry on till today, though I had kept lowering my standard. So, I have put up the quite a high standard to my kids initially cooking them the healthy food. However effort not appreciated most of the time, sometimes even my hubby would complaint of the food being too plain. He wanted more flavour.
And all my kids don't really care about how nutricious is the food, what they want is the good tasty food. Typically deep fried crispy food with all the rich sauces and flavour. No matter how many times I have told them what's the benefit of each food. Wasted all my effort...I really envy those moms that are able to have kids that will eat on healthy but plain food. I guess it'll never happen in my family.
When they were younger, it was much easier to enforce my way of cooking over their appetite; a lot of vegetables and very little meat/fish/egg/beans. My favourite food is all in one brown rice porriadge or all in one fresh blendered fruit juice. But they ended up with the "bamboo" shaped body. Naturally this mother would be blamed...Very soon, my kids were getting smarter, they started boycotting my food. So, I had no choice but to give in. That ended up with very limitted choice of food that they take...They favourite food are fried egg, fried boneless fish, fried potatos, candies, ice cream, chocolate, biscuit.
With our society getting richer, most of the parents would spend money on junk food for their kids to make their kids happy. Their love a lot of time will extend to their kids' friends too. Last time, when I went to school; I only got the goody pack once a year that was on Children Day. But nowadays in the kindergarten, almost everyday there's a birthday party going on in the school. After the birthday party, the birthday kids would pass around a big bag full of goodies. So much so it had becomed a trend. Even my kid asked me to prepare them the party pack. But unfortunately most of the time those food were not home cooked food. Even when you prepared home cooked food, the kids won't enjoy it. So, the goodies ended up to be kids' favourite but unhealthy food. They were mainly artificial junk food with lots of coloring, flavouring and preservatives; some were even made in China...I do not want to be prejudice, but recent news on the China food industry just kill my confidance over them. These goodies bags have been the point of the war between me and the kids. Whenever I stopped them from having their goodies, they would get very upset and think I was overacting. To them, the other moms were not like me. So, their words hit me inside. I was thinking should I just give in so that they would enjoy their junk food? At the same time, I saw the bad side effect of controlling the food too. My kids would find all ways and means to sneak in the junk food from my mom's house. They would keep the food in their pillow, throw the food wrapper underneath my cupboard/bed....
Till now, a war would still take place whenever the junk food come to my house; even though I had started keeping one of my eyes closed. And most of my relatives thought I was overcontrolling my kids' food intake. To them, I shall just follow the tide and join the crowd. If one understand the word 'You Are What You Eat' thoroughly, one would understand why I do so. I am not surprised why nowadays children have so much behavarior problem cause the food played an important role...
KF
Wrote on 6 Aug 2011
And all my kids don't really care about how nutricious is the food, what they want is the good tasty food. Typically deep fried crispy food with all the rich sauces and flavour. No matter how many times I have told them what's the benefit of each food. Wasted all my effort...I really envy those moms that are able to have kids that will eat on healthy but plain food. I guess it'll never happen in my family.
When they were younger, it was much easier to enforce my way of cooking over their appetite; a lot of vegetables and very little meat/fish/egg/beans. My favourite food is all in one brown rice porriadge or all in one fresh blendered fruit juice. But they ended up with the "bamboo" shaped body. Naturally this mother would be blamed...Very soon, my kids were getting smarter, they started boycotting my food. So, I had no choice but to give in. That ended up with very limitted choice of food that they take...They favourite food are fried egg, fried boneless fish, fried potatos, candies, ice cream, chocolate, biscuit.
With our society getting richer, most of the parents would spend money on junk food for their kids to make their kids happy. Their love a lot of time will extend to their kids' friends too. Last time, when I went to school; I only got the goody pack once a year that was on Children Day. But nowadays in the kindergarten, almost everyday there's a birthday party going on in the school. After the birthday party, the birthday kids would pass around a big bag full of goodies. So much so it had becomed a trend. Even my kid asked me to prepare them the party pack. But unfortunately most of the time those food were not home cooked food. Even when you prepared home cooked food, the kids won't enjoy it. So, the goodies ended up to be kids' favourite but unhealthy food. They were mainly artificial junk food with lots of coloring, flavouring and preservatives; some were even made in China...I do not want to be prejudice, but recent news on the China food industry just kill my confidance over them. These goodies bags have been the point of the war between me and the kids. Whenever I stopped them from having their goodies, they would get very upset and think I was overacting. To them, the other moms were not like me. So, their words hit me inside. I was thinking should I just give in so that they would enjoy their junk food? At the same time, I saw the bad side effect of controlling the food too. My kids would find all ways and means to sneak in the junk food from my mom's house. They would keep the food in their pillow, throw the food wrapper underneath my cupboard/bed....
Till now, a war would still take place whenever the junk food come to my house; even though I had started keeping one of my eyes closed. And most of my relatives thought I was overcontrolling my kids' food intake. To them, I shall just follow the tide and join the crowd. If one understand the word 'You Are What You Eat' thoroughly, one would understand why I do so. I am not surprised why nowadays children have so much behavarior problem cause the food played an important role...
KF
Wrote on 6 Aug 2011
Thursday, August 4, 2011
What Happen Last Christmas Eve 2010
It has been 5+ years that myself, Yen Ling & Wei Ling travelled to Hospital Kuala Lumpur every 2 weeks for the girls' Myozyme infusion.
There was a period of time that I wished their infusion could be done in Seremban instead of KL. Driving in KL is no fun especially on Friday's evening. Things got a lot more ugly when the Friday happened to be a holiday's eve. And guess what, I bumped into it last Christmas eve, a 1 hour drive home turned into 3 hours...To make things worse, I was driving my 15 year old manual geared Nissan Sentra. I had never complainted about having a manual car. But that day, I regreted it. I could only remembered pressing the clutch on and off, non stop through out the journey. Even the Smart tunnel was not too smart on that day, it used to be my savior but not on that particular day. The swamp of travelling South just paralyzed the entire traffic flow right from Jalan Ampang and Jalan Tun Razak junction all the way to Seremban. Luckily my 3 kids (my boy would tag along during school holiday) were sleeping most of the time, else how could their bladders handle such long hours of not going to toilet.
All sort thoughts run into my mind. How nice if I could have flexical car whereby the whole car got lifted up and the wheels could be adjusted wider to eat into the little spaces in between 2 cars. How nice if I have gone straight to my sister house in Pandan Perdana to put up a night to let the traffic cooled down by itself. How nice if I have started my going home journey early. But none of these thoughts helped, they only made me felt worse. So, I decided not to dwell in further...Really slow and steady, I reached home after 3 hours of struggling on the road. That day, I thought my body had become a turtle...But my mind had changed into another animal, a red bull...
So, I had to accept that I just hit on the jackpot that I was just too smart to be part of the migration program from North to South. Sometimes I think Malaysian is pretty much a modern nomat, we will be having massive migration during all the festive seasons.
Tomorrow I will be going to KL again for the girls' infusion. Wish me luck.
KF
Wrote on 4 Aug 2011
There was a period of time that I wished their infusion could be done in Seremban instead of KL. Driving in KL is no fun especially on Friday's evening. Things got a lot more ugly when the Friday happened to be a holiday's eve. And guess what, I bumped into it last Christmas eve, a 1 hour drive home turned into 3 hours...To make things worse, I was driving my 15 year old manual geared Nissan Sentra. I had never complainted about having a manual car. But that day, I regreted it. I could only remembered pressing the clutch on and off, non stop through out the journey. Even the Smart tunnel was not too smart on that day, it used to be my savior but not on that particular day. The swamp of travelling South just paralyzed the entire traffic flow right from Jalan Ampang and Jalan Tun Razak junction all the way to Seremban. Luckily my 3 kids (my boy would tag along during school holiday) were sleeping most of the time, else how could their bladders handle such long hours of not going to toilet.
All sort thoughts run into my mind. How nice if I could have flexical car whereby the whole car got lifted up and the wheels could be adjusted wider to eat into the little spaces in between 2 cars. How nice if I have gone straight to my sister house in Pandan Perdana to put up a night to let the traffic cooled down by itself. How nice if I have started my going home journey early. But none of these thoughts helped, they only made me felt worse. So, I decided not to dwell in further...Really slow and steady, I reached home after 3 hours of struggling on the road. That day, I thought my body had become a turtle...But my mind had changed into another animal, a red bull...
So, I had to accept that I just hit on the jackpot that I was just too smart to be part of the migration program from North to South. Sometimes I think Malaysian is pretty much a modern nomat, we will be having massive migration during all the festive seasons.
Tomorrow I will be going to KL again for the girls' infusion. Wish me luck.
KF
Wrote on 4 Aug 2011
Doctors' Expectation - Part 1
There were times that I was so stressed up by the doctors' expectation. What they hope for are my girls to remain in healthy condition with continous positive progress and consistently acceptable academic achievement. I could reason out why doctors have such expectation. Mainly because they will need to answer to higher levels to see how effective is the drug. And if the medical budget is well spent. My fear was if my girls' turned out not within the expectation, what would happen next...
Unfortunately, their weight gain performance just can't meet up with the expectation...Wei Ling is the one that gave me more headache. Her weight gain was extremely poor. But luckily she still grows in height, or else things will be very complicated...For her to gain 2.5kg, it takes her almost 2 years. Why every 2.5kg is crucial to her, it's because for every increase of 2.5kg of her weight, she will require 1 extra bottle of Myozyme. So, I would track down her weight in every visit to the hospital. But 13 pcs of teeth being removed at the end of 2008 had been one of the major contributor to her slow gain as her chewing ability had been compromised. On top of that, she was very succeptible to infection. Every time she had any cough and cold, her weight will go down quite significantly. So her weight gain was like a roller coster. At 7 year old now, she only weighted misarably at 15kg (around 5kg below par)...She was referred twice to two different dietitians, but her small appettite just can't feed in the menu that the dietitians wished her to have. Else, she would be complaining of stomach ache. Then the doctors suggested G-tube, direct stomach tube feeding. But even the thought of her going thru the OT process was killing me, so the option was out. Finally, I have given up to ask her to feed as per recommended. As long as she is well and healthy, I don't care how slow she is going to gain her weight.
Unfortunately, their weight gain performance just can't meet up with the expectation...Wei Ling is the one that gave me more headache. Her weight gain was extremely poor. But luckily she still grows in height, or else things will be very complicated...For her to gain 2.5kg, it takes her almost 2 years. Why every 2.5kg is crucial to her, it's because for every increase of 2.5kg of her weight, she will require 1 extra bottle of Myozyme. So, I would track down her weight in every visit to the hospital. But 13 pcs of teeth being removed at the end of 2008 had been one of the major contributor to her slow gain as her chewing ability had been compromised. On top of that, she was very succeptible to infection. Every time she had any cough and cold, her weight will go down quite significantly. So her weight gain was like a roller coster. At 7 year old now, she only weighted misarably at 15kg (around 5kg below par)...She was referred twice to two different dietitians, but her small appettite just can't feed in the menu that the dietitians wished her to have. Else, she would be complaining of stomach ache. Then the doctors suggested G-tube, direct stomach tube feeding. But even the thought of her going thru the OT process was killing me, so the option was out. Finally, I have given up to ask her to feed as per recommended. As long as she is well and healthy, I don't care how slow she is going to gain her weight.
KF
Wrote on 4 Aug 11
Wednesday, August 3, 2011
Why Do I Start To Write After 3 Years?
Well, I was not sure if I really want my family story to be known to the general public 3 years back then. I had this other worry that someone might just kidnap this and change into theirs, suddenly Kian Foon became someone else.
But at the same time, having a blog seemed to ba a fashion then, as a homemaker with self controlled free time, it looked kind of bad not to have one...
So, being a natural libra, this kind of 50-50 thought has made me written down few posts but never wanted them to be posted until today...
Continue going to hospital every 2 weeks for my girls' infusion and seeing different patients is the key reason behind reviving my blog. I hope I could do something for the patients, at least to share with others what had happened. Hopefully someone may benefit or learn something out of this.
It's the same reason why I want MLDA to be known to all so badly. It's really the real human lifes that are in my mind. I had met up with 2 other Pompe babies but they both died after treatment due to late diagnosis. One after 2 treatments and the other one after 2 years of treatment. The latter sadden me more as he was showing improvement but still it's still too late for him. If they had been treated earlier, things will be totally different. I had seen a Taiwan Pompe boy had his treatment started within a month old, his condition was so good that I could not tell his difference to another normal boy. That was during my Taiwan trip back in 2007.
And I had seen cases of patients that are no longer eligible for treatment because the conditions had extended to their brain. A guideline being practiced in most parts of the world that treatment will not be offered to any patient with neuro/brain involvement. Sad and frustrating but it's true and it's happening before my eyes...
So, you see it's hard not to share with you what I see and how I feel...
KF
Wrote on 3 Aug 2011
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