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
Tuesday, August 9, 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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