Let us all, as compassionate Malaysians, donate liberally to a Malaysian charity endowment/fund, says Ramon Navaratnam.
Like most Malaysians, I must admit that I was greatly saddened by the pathetic story of Rubee Ahmad and Sharin Abd Rahman, whose sorry situation was highlighted, by the recent Star article titled ‘On Angels Wings’.
It is about how gallantly these parents are struggling with great hardship and wonderful compassion to give their best to their two disabled sons Adam and Amran, who are suffering from Hunter’s syndrome.
This is a rare disease that afflicts about 150,000 children in Malaysia. For both children they have to pay RM60,000 for four treatments a month. In more serious cases, the costs could be much higher with rising medical charges.
This begs the question as to how the poor manage to look after their children with this dreadful disease such as Hunter’s syndrome and other similar disastrous diseases.
Just as relevant is to ask the question: how do the poor rakyat support children with even more cruel and debilitating diseases and those with disabilities? It is true that the government helps out with some aid. But from all accounts, the government aid is often grossly inadequate.
Malaysia Lysosomal Diseases Association president Lee Yee Seng clearly states that the last Budget of RM16m for rare diseases is “grossly insufficient”.
The government has serious budget constraints. Even if it cuts down on corruption and expenditure wastage and manages to increase public sector efficiency, it will still be restrained from doing much more for the disabled.
So what is the answer to help people with disabilities and those unfortunate Malaysians with rare diseases?
National fund for charity?
The government has to encourage the public to contribute to a national fund for charity to help the very poor, those with rare diseases and people with disabilities.
This noble goal could be achieved by:
- establishing a public charity or endowment fund;
- providing the fund with tax-free status; and
- transferring an initial launching grant to the fund.
- recognising the need to emulate the national fund to reduce the national debt previously (If we can ask for public donations to settle the national debt, why can’t we do so for charity too, which will help the bottom 40% of households?);
- encourage crowdfunding like we did previously. This charity fund can remain in perpetuity as an endowment. The funds collected could be invested and the income from it can grow and multiply for the benefit of our poor and disabled.
If the government is adopting its new `”shared prosperity” policy, what better start can we make than to establish this new national endowment/fund to help the most deserving of the poor and the disabled, especially those suffering from rare diseases?
So let us all, as charitable and compassionate Malaysians, donate liberally to a Malaysian charity endowment/fund through crowdfunding.
If each of our 16 million adults donates just RM1, we can raise as much as the last Budget allocation of RM16m that was allocated, to alleviate the suffering of those unfortunate Malaysians with rare diseases. Surely most of us can donate more that RM1 each to raise more funds for the poor and people with disabilities.
That should be our national challenge as caring Malaysians. Can we take up this challenge?