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