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
Thursday, August 11, 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
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