My name is Mahmud Shajib. I am 16 years old. I suffer from heart disease -congenital cyanotic heart disease. The doctors in my country Bangladesh have given up on me as my case is serious. I know I will die soon if I do not get medical treatment.
My body aches and I feel pain in various parts of my body, esp. now in my back and chest. My hands, legs and nails are blue in color all the time. I cannot sleep at night from pain. I have difficulty in walking. I sometimes bleed from my mouth and back. The doctor says it happens due to high blood pressure.
I was born on 6 March 1996 at Dattapara, in the city of Khulna in Bangladesh. I have 3 sisters and two brothers. I am the youngest. I have been sick from birth. When I was a baby everyone thought I was having asthma. Then, at the age of three I was diagnosed as having heart disease, diagnosed by a local physician.
My father died when I was nine months old. He was the sole breadwinner. His death left us destitute. My mother was just a housewife at the time of my father’s sudden and untimely death. Thrust upon her quite so suddenly was the great responsibility of providing for and bringing up the family. There was no money to start with. We were not wealthy and we did not have any money or land or any means of income other than what my father had earned. He had worked in a private company and we had no savings. My mother tells me that when my father died we were given a small amount of money from his company, a one-time payment that did not stretch very far. My father had no insurance and my mother did not get a pension from my father’s company or the government. Our life has been one that has been dependant on the kindness of our relatives.
When our money ran out my mother could not afford to bring me to a physician or give me the blood transfusions that I required. Without the blood I was blue, weak and in pain. This is the life I have known, most of my life. She even found it difficult to purchase pain medication for me, which she would do whenever she got some money, from a small pharmacy near our house without a physician’s prescription. I would be in pain most of the time. I felt pain in various parts of my body. This made it impossible for me to do anything, even sleep. The pain was very hard to bear. It was like a hundred teeth being pulled out of various parts of my body. I would sometimes feel like my head had a big wound in it. I could only find some relief when I felt faint on and off.
I went to school very late at the age of 10. My mother admitted me to school at a late age because I had difficulty in walking. I would collapse after a short walk. My mother used to take me to school on her lap. But however things have not been easy for me as I would end up having to lie down when the pain takes over. I am now in grade 4, that is the fourth year of primary schooling. I attend the Khalishpur Government Primary School in Khulna. I know I am the oldest in my class at 16 years but I look no different to the rest of my classmates as a result of my illness. My classmates are all 9 years old. I am good in my class work. I am the first in class. My teachers are good to me. They visit me at home if I cannot attend school. I see my classmates play games, run around and enjoy themselves. I always wish I could join them.
I have tried to find answers for my illness. I sometimes wonder if god is punishing me. I am very religious. The illness has brought me closer to god. I try to say prayers five times a day at the mosque near our house. I pray to god to find me a cure and bless me with a good and productive life.
The greatest pain in my life has been to see the tears in my mother’s face when she prays to god for a cure for my disease. She knows little and can do nothing else but pray. She has been my strength, my life support. She does everything for me. She helps me in the toilet, helps me to bathe and to wear my clothes. I know she tries hard to make me comfortable with her limited resources. I am helpless as I watch her suffer.
After my elder brother got a job a few years ago he has been paying for my medicine, pain medication and blood transfusion. He has been good to me. It is a very big percentage of his salary. He is now married and his wife is expecting their first child. I know I am a burden to them. I am a burden to all.
I wish I can find treatment and be cured of my illness. I have promised myself that the first thing I would do is to look after my mother and rescue her from her suffering. I just cannot bear to see her suffering. I would like to study well, finish my education and dedicate my life to helping those who are like me now, suffering and helpless, a better world, a wonderful world for us all.
I can only hope that by some miracle I can live to see my dreams of a wonderful world.
(Thoughts as narrated by Shajib with the aid of his elder brother Khijir in Bengali and translated in to English)
(Thoughts as narrated by Shajib with the aid of his elder brother Khijir in Bengali and translated in to English)
