My mother often tells me that I am a born beauty. She says that I had a fair skin and the brightest smile as a kid. As I grew, my skin complexion gradually started to change into something bluish and dark. My mom started noticing that I had ceased to grow in height and health in comparison to other kids my age. I had a tiny structure and couldn’t digest my food. I would fall ill most often and whenever I cried my body used to turn blue. Most of the time, I was short of breath.

This worried my mom for a long time before she decided to see a doctor and discuss my case. The doctors concluded that I was born with a heart disease. However, they couldn’t confirm my disease for want of adequate technologies.

I was in the ninth standard when my health started deteriorating. One of the doctors from Teaching Hospital recommended a heart surgery to keep me breathing and that is when my family decided to consult a renowned heart surgeon. We went to Shahid Gangalal Hospital and an angiography revealed that I had a hole in my heart.

I was diagnosed with Tetralogy of Fallot (TOF) in 2001/2.

The doctors fixed a date for my surgery, which would close the hole in my heart. But, later we learned that the TOF had brought about other complications as well. The bluish skin and hole in my heart were only a few of my problems now. The doctors then said the surgery would not be of much help.

As we decided not to continue with the surgery, I have been living with my heart disease ever since. I was born with it and my pains could never be cured.

Although with the passing time I have managed to continue living like any healthy person, I am not whole. I endure extreme physical pain and have to constantly depend on others for daily chores. I need assistance to take a bath especially during cold weather.

Living with this disease has not been easy. The mental trauma it carries wears me down every day despite my best efforts to keep a positive attitude towards life. When I was in the 3rd year of Bachelors education, my classroom was in the 6th floor. It was an excruciating journey to the classroom. I would pause several times to breath in, take some rest and move on.

The disease has affected my life in each and every step. Sometimes, I have to take bed-rest for months. However, amid all these hardships, I sometimes feel there has to be some powerful force that is keeping me alive. I believe that god has been graceful enough to provide me with the strength to face tough times.

Today I have grown to be become an educated and strong girl. My mother still sees me as the same bright and beautiful girl like she did on the very first day. I hope I am cured one day so that I can enjoy my life to the fullest. Oh how I wish to know how a healthy body feels like!

(Sunita is 29 years old, and has completed her Bachelors education from Xaviers International College)

Note: Tetralogy of Fallot (TOF) is a congenital heart disease, meaning a heart defect since birth. This condition results in lack of oxygen circulating in the body and turns the skin color to a bluish hue, a condition called cyanosis. The defect consists of a combination of four abnormalities in the heart. 1) Hole between right and left ventricles. 2) The pulmonary artery that carries deoxygenated blood to lungs is fully blocked. (But small collateral arteries somehow help to supply blood). 3) A thickened right ventricle. 4) An aorta that lied over the hole between ventricles.