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
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