Establishing a charitable foundation to assist others isn’t a fantasy I conceived overnight. I decided what I wanted to do with my life in Primary school. At the age of eleven, I figured that I wanted to help people and I would become a psychologist to do it.
To study Psychology in the year of 2004 when I graduated from secondary school was very expensive for a Malaysian youth. My parents and I were also facing general financial difficulties. But I kept that 11-year-old decision of mine through thick and thin, and I seized the chance to study for a psychology degree at the 1st opportunity when a local college collaborating with an American university offered me a place.
But most of what I have learned about helping people came from life experiences rather than my college textbooks. College enlightened me theoretically, but in my daily life, I live what I wanted to be.
Through growing up in a stressful family environment after my father suffered a stroke when I was 3 years old.
Through my personal battle with Neurofibromatbs Type 2.
Through running a fund-raising campaign to pay for my own medical treatments.
Through assisting those who came to me for moral support and physical assistance.
Through travelling to America for my medical treatments and meeting patients from all over the world.
When I was diagnosed at the age of 16, I thought that since I already have this genetic condition, I might as well do something good with it. I wanted to form a support group or society. When I had to raise funds for my own treatments, I made it into an awareness campaign.
Throughout the initial 7 years of the Heart4Hope campaign, people facing different life challenges came to me for moral support and physical assistance including other Neurofibromatosis patients.
When people came to me for help, I would want to assist them to the best of my ability. One case after another, I gradually learned how to be an effective and efficient helper.
As time went by, I became certain that there are many other NF patients across Malaysia, some of whom have manifestations that are far worse than mine. I need a more formal way to help them, and a more equipped one too. That was how I decided to establish a charitable foundation.
While the decision to establish a foundation grew more certain in my heart, my mind continued to work on formulating the foundation’s operational scope and direction.
Based on my years of experience reaching out to and assisting others, I decided that this foundation’s mission shall be:
Improving quality of life and healthcare access for Neurofibromatosis patients in Malaysia and beyond.
It means that we shall base our decisions on what has the highest chance of maintaining a patient’s quality of life. More often than not, a patient’s quality of life deteriorates not because a tumor grew, but because of poor or delayed judgement, management and treatment. This foundation shall improve NF patient’s quality of life by providing financial and logistical assistance to acquire the treatment option that has the best chance at maintaining quality of life.
The second mission to improve healthcare access exists because NF patients in Malaysia are facing difficulty in gaining access to medical care. We all know that cost of treatment at private hospitals is exhorbitant for those who need long-term care. But poor access to healthcare is an even bigger issue in public hospitals. Patients need to know which surgeons to seek and how to reach them, whether it is in the public or private hospital sector. This foundation shall guide patients in gaining access to the medical care they need.
I included the word “beyond” because I strongly believe this foundation will gain worldwide attention, just as my Heart4Hope campaign has. There may well be internalional support for the foundation, and there may also well be people from around the world seeking our support. When, God-willing, the foundation grows to the needed capacity, we shall assist patients internationally.
By carrying out our mission, we shall be a celebration of life, inspiring people to appreciate their lives.