My name is Shivani and for the past few months, I have been living in Cochabamba, Bolivia. Bolivia is the poorest country in South America, with over half of its population to be considered in poverty. Here, I worked with Bolivian doctors to treat children with disabilities. While in Bolivia, I had the opportunity to see many different orphanages and centers for children with disabilities. The facilities lacked supplies and technology and many of the children seriously needed surgeries which they could not afford. The Bolivian government did not provide much support nor funding for these children; at most centers, they assisted in fees associated with the costs of food, but even that was not very adequate. There was no support in the costs of medications or medical care, and having disabilities unfortunately requires a significant amount of medical attention. In Bolivia, these surgeries are extremely expensive. However, when converted into American dollars, most of them are only a few thousand dollars.
Ema is one of these children who desperately needs a surgery, but his family can not even imagine having the kind of money to pay for one. Ema was born with Trisomy 21, more commonly known as Down Syndrome. As an infant, he delayed in learning to walk and crawl and also has a delay in language development. Ema has a congenital heart defect called patent ductus arteriosus (PDA). It is a condition in which the ductus arteriosus does not close and leads to abnormal blood flow between the aorta and pulmonary artery. As a result, a murmur can be heard in the heart area. Basically, a valve in Ema's heart does not close properly causing his oxygenated and deoxygenated blood to mix. As a result, he never has sufficient oxygen in his blood. This condition is also accompanied by severe persistent pulmonary hypertension due to the fact that his lungs must constantly be working extremely hard. There is abnormally high blood pressure in the arteries of Ema’s lungs, which if not treated, could cause heart failure in the right side of the heart. Although this condition has been present since birth, it was only discovered 2 years ago via X-ray and echocardiography, which is simply a sonogram of the heart. Evidence includes cardiomegaly, enlargement of the heart, and increased pulmonary vasculature on his chest radiograph. In addition to the above, he has a diagnosis of bilateral cryptorchidism, where he has undescended, nonpalpable testes. Ema stands at 3 feet, 8 inches and 47.6 pounds, whereas normal standards for his age would be 4 feet, 3 inches and 70.4 pounds, and has failed to grow in the past few years. He fatigues very easily during activities of medium intensity. He desperately needs a heart surgery, but is unable to afford it. With only a single mother and an older brother, being able to fund such a surgery seems out of the question for Ema and his family. It is uncommon for women in Bolivia to work jobs that could make money equating to the amount needed for the surgery. This opportunity is Ema's one shot to get this surgery to save his life.