“Do you know what is the happiest day of the year for me? It is my birthday! You see everytime my birthday comes, it’s like I have triumphed again over the trials in my life, and of course, me and my family are together on this day.” So wrote Lenny Mae in one of the numerous cards she made when she was still alive. Sadly she succumbed to a disease known as thalassemia, a hereditary blood disorder that affects one’s ability to produce haemoglobin in red blood cells, resulting in mild or severe anaemia. Lenny Mae died right on the day of her 18th birthday in November 2008.
Sixteen-year-old Mark Louie is a younger brother of Lenny Mae and he too is afflicted with thalassemia. He is the third member of the family to suffer from this illness. Another sister, Lalyn, the eldest in the family, died in 1993, also from thalassemia; she was only nine years old.
Mark Louie (16) is the youngest in the family. He lives with his parents and brother Mario Jr. (29) and sister Maria Theresa (18) in a small cement-floored bamboo house in the poor fishing village of Valladolid, a 40-minute bus ride south of Bacolod, the provincial capital. His mother, Melu (53), makes coconut sweets for sale; she also sells fresh coconut water. His father, Mario (58), used to be a carpenter but when his eyesight worsened due to cataracts he switched to peddling fish. As for Mario Jr., he works in a small grocery shop in the next town and contributes to the family income as much as he can.
Due to his health condition, Mark Louie stopped going to school six years ago; he finished only grade four. Now he attends ALS (Alternative Learning System) classes in his community. These are held on two afternoons a week, Mondays and Thursdays. ALS is a modular non-formal education program for dropouts in elementary and secondary schools. Here students can choose schedules according to their choice and availability. At the end of the session, students bring home their modules which they must fill up and then submit to their teacher in their next session. In Mark Louie’s community, there are about a dozen individuals attending ALS classes and he (Mark Louie) is the youngest.
Maria Theresa, Mark Louie’s older sister, really wanted to do even just a one-year computer course so that she could have a qualification to show when she would apply for a job. So in June this year, Melu enrolled her daughter in a one-year course in bookkeeping in a vocational school in Bago city, two towns away from home. She (Melu) was able to pay her daughter’s registration fee of 1,000 pesos with her savings from her coconut sweets business as well as from her husband’s fish vending. Later on when the mid-term examinations came, she was fortunate to receive a cash gift of 2,000 pesos from a relative which she used to make a first payment of Maria Theresa’s tuition fees. She still has to come up with 5,000 pesos as the tuition fee for a semester is 8,000 pesos. The deadline for the payment for Maria Theresa’s pre-final exams is drawing near but Melu does not know where to get the money from. This is the reason why she has approached the PSHF for help.
Meanwhile, Mark Louie will be needing a blood transfusion soon as he is beginning to look pale again. He used to have monthly blood transfusions due to his enlarged spleen which caused him to suffer from severe anaemia. In March 2010, he underwent a splenectomy at the local government hospital and an anonymous donor paid the bill of around 30,000 pesos ($675). Now his transfusions are reduced to once every three to four months.
The PSHF would like to help this poor but persevering family by providing a grant of 25,000 pesos for Mark Louie’s transfusions as well as for his sister’s tuition. When Maria Theresa finishes her bookkeeping course, she will take an examination. If she passes it, she will receive a national certificate from TESDA (Technical Education and Skills Development Authority) which will make it easy for her to get a job. She is looking forward to the day when she will be employed and be able to help support her brother’s medical treatment.
Richard Foster & Bernadette G. Togado