I met with Puan Sunarti in HKL early this year, couldn't remember the exact date now. From did not each other, we had become good friends. She has 2 MPS II (Hunter) sons. MPS II patients will not grow tall, their height will stay around 100-120cm even when they grow up. Besides, they have stiff joints, weak vision and poor hearing. For the less fortunate one the condition will extend to their brain. Gradually they will have lost of mobility, lost of speech, lost of capability to take care of themselves. That happened to a few and I will share with you their stories later. The elder 12 year old son Khairul Nazmi Azizi (called Nazmi later) is under treatment but the youngest 2 year old son Khairul Muiz Muhaimi (called Muiz later) is not.
We were destined to meet up with each other. Why? Cause she only came to HKL every alternate week even though Nazmi needs weekly infusion. The other week, her hubby will be coming. And out of 5 working days, she comes to hospital on Friday the same day with me. So, with so much possibilites we still meet up with each other. That is what I call "有缘人" in Chinese.
I was really moved by her courage to fight on. She had become a housewife after getting married. They stay in Mersing, Johor; a small town that is close to Pulau Tioman. Despite the distance of her house to HKL, they had not missed any infusion yet even though it was a weekly affair. Despite the financial burden that her more than half of her family income would have to be spent on the travelling which is about RM800 a month. But I had seen other patients skipping the medication due to certain circumstances but not her.
What more, she did not shy away from letting others know about her family story. She allowed us to video her sons while waiting for the bus to go back to Mersing. She knew very well that she will need more people to know in order to save Muiz.
Last Friday in HKL I asked her if she was ok to let me put up their story in MLDA website. She welcomed the idea without any hesitation. So my interview started. In the process of interviewing, I was further amazed by her. When I asked her the growing up stories about Nazmi, she remembered them well. But what amazed me more is her orderliness, she was the first mom that I have seen brought all the important documents and photos with her. Interviewing job had become a breeze. During the interview, she started showing me photos of Nazmi when he was newly born, started to walk, becoming brother, after heart operation and recently. Besides, all the medical examination booklets, medical reports were so well kept in the file. And the best part was, she brought them with her whenever she goes to the hospital even though she was travelling by bus. No wonder she was having so many bags with her...I asked her why, she told me she did not know what to tell the doctors but she did know if she brought everything, the doctors would understand better. She really knows what to do to help her sons.
Not only that, she had tried once to walk from Titiwangsa Komuter station all the way to HKL just to see if she can save the taxi fare. Later that she found that it was not a good idea to walk with big bags and 2 sons, Muiz had to walk all the way back cause she had no more hands to carry him. Pure thing...She would visit the welfare office in HKL to get the fare relief in every visit, even though it was not full reimbursement. She would keep looking for funding to relief the financial burden and never had the "malu" thought. She knows that she has 4 children welfare to be taken care of.
She had also reflected to doctors many many times to let Nazmi get treatment in JB instead of KL. Her never give up spirit had made the doctor to grant her the wish. Finally the doctor agreed to do so. Soon Nazmi will get treatment in JB.
I truly salute her for her courage, for her non giving up spirit. Way to go, Puan Sunarti.
KF
Wrote on 11 Aug 2011
