One day in March 2011, I received a phone call request to form a new society for all Lysosomal Storage Diseases’ (LSD) Patients in Malaysia together with the other LSD parents. On one hand I asked myself if I was ready to take up this new responsibility? On the other hand, being the father of 2 Pompe girls - I knew very well that every single second counts for all LSD patients. The answer was clear then, and I made up my mind that this will be the mission of my life. This will be my first priority.
I believe that all Malaysians should have a fair chance to realise their dreams. I believe that all Malaysians should have the equal right to treatment despite their conditions. Cost of the treatment should not be the barrier to starting any treatment. No one should judge the worth of any life by the treatment costs.
Patients who are afflicted with LSD are a reflection of fire flies in the night - their light is rather weak, but they continue to shine in every corner in the world. We must understand the reality of rarity; it is not their choice but their destiny to shoulder this burden of falling into the probability of the ‘lucky’ group.
Therefore, there is one choice we can not make, one we are incapable of making: we will not choose the path of submission and let the most sacred rights of our children be ignored or violated. Their existence shall educate all of us to be thankful when we have a normal child.
I have a dream; any new born in Malaysia live without fear of inheriting these horrible diseases;
- Let the children in Kangar, cycle across padi fields;
- Let the children in Taiping, paddle at the recreation lake gardens;
- Let the children in KLCC, swim and play at the water park;
- Let the children in Seremban, enjoy flying a kite with their families at S2 City Park;
- Let the children in JB, have fun building sand castles at Desaru;
- Let the children in Kuantan, have fun mountain climbing at Bukit Lembing;
- Let the children in Terengganu, compete in their gasing games;
- Let the children in Bintulu, sing happily with their parents after their dinner; and
- Let the children in Sepilok, spoon feed Orang Utans at the National Park.
Children with LSD will be not able to enjoy the kind of life above with their parents if they are not treated early. This disease will erode their quality of life every single day, and will continue to do so until they are no more. No loving parents should have to bear witness to the destruction of their innocent children from these treatable diseases.
Today, with the full support from the board members, we will continue our effort to fight for the rights and liberties of this small and neglected population. To such a task we dedicate our lives and our fortunes.
We are optimistic that the Ministry of Health under its current administration will continue providing new hope for the treatment of LSD patients. And that the Government of the people, by the people and for the people will act with integrity and bring us pride.
On you depend their tomorrow.
Ir. LEE YEE SENG