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
Wednesday, August 10, 2011
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
Subscribe to:
Posts (Atom)