Although nobody is positive of his exact age – 15? 16? – and dates and details are hazy about various other elements of his childhood too, one thing is for sure: everyone who knew Akshay Waghri remembers him as a bright, sensitive, compassionate boy. Extremely active, even as tuberculosis and associated complications slowly took over more and more of his body and he was increasingly confined to his bed, he loved to have visitors and guests and enjoyed reading. By the end, he was no longer able to hold a book, but he still followed Hindi-language soaps on the neighbor’s TV. His younger sister, Kiran, read to him whenever she had time. Akshay was engaging and charming in conversation, and always remembered little details about people that they had mentioned in previous conversations. He was incredibly protective of his two younger siblings, ushering them to and from school and tutoring at the AIC Education Centre until he became too weak to accompany them any longer.
On January 20th, 2015, Akshay lost his 18-month-long battle against tuberculous meningitis.
Akshay’s story is a tragic one, for many reasons. His family is devastated. His teachers are devastated – he had such promise, and his mother pinned her hopes for an educated boy in the family on him. Akshay’s four siblings, ranging in age from 9 to 23, are devastated. And the entire AIC family mourns the loss of this sweet, smart boy.
Unfortunately, Akshay’s family is no stranger to hardship. His father died 8 years ago, when Akshay’s youngest sibling was just a baby. His widowed mother struggled to keep her five children fed on the 2,000-3,000 INR ($30 – 50) per month that she managed to scrape together by selling clothes in the market. About six years ago, she was forced to take out a loan of 30,000 INR ($500) to finance her eldest daughter’s wedding, and because of the predatory moneylending practices to which many in the slums fall prey, she then owed an additional 5,000 INR every month in interest alone. Before joining AIC, Akshay and his younger siblings could frequently be found begging on the streets to supplement their mother’s income, and the family often went without eating for days at a time.
The biggest tragedy, though, lies in the fact that Akshay died of a disease that should be completely preventable and entirely treatable in the year 2015.
Akshay first began showing signs of illness – headaches, dizziness, nausea, fever – in the summer of 2013, a few months after returning from a trip to the family’s native village. Fearing that he had been cursed, and betraying a misunderstanding of disease and deep-rooted superstition that is common in the Waghri community, his mother spirited him away to a nearby temple when she first realized he was sick. The days-long procedure of pujas and healing waters did not prevent Akshay from getting sicker, but they did prevent the healthcare workers at AIC from finding out about his tuberculosis until it was already becoming heavily symptomatic and advanced. Even once our health workers caught wind of the situation, they had to intervene by convincing the Waghri panchayat (tribal council) to pressure Akshay’s mother into letting him be hospitalized and treated, because she was convinced that he would be cured at the temple, and resisted medical treatment. By this point, Akshay’s headaches were debilitating, he was unable to walk, and had become extremely weak. Once he was admitted to the hospital, in September 2013, doctors immediately discovered the cause of his alarming decline: Akshay had tuberculous meningitis, or, commonly, tuberculosis of the brain.
We were able to negotiate with hospital social workers to ensure high-quality treatment at one of the best private hospitals in Pune, resulting in a successful emergency brain surgery, yet Akshay’s recovery was slow and he remained extremely fragile. Despite frequent check-ups with specialists, an ongoing medication regimen, daily deliveries of protein- and energy-rich food to him and his family, and routine home visits from an AIC health worker, his health remained precarious. After a number of months of stagnation, Akshay began to decline again. Finally, he had to undergo a second brain surgery this fall to drain fluids that had built up. Akshay never fully recovered from this second operation, and he faded away in his sleep less than three months after this surgery.
Even today, 1.5 million people still die of tuberculosis every year worldwide, though the overwhelming majority of these deaths (98%) occur in developing countries. Tuberculosis is, in short, a disease of poverty. Although child mortality has declined sharply since AIC began working with the Waghri community in 2006, Akshay’s death is a hard reminder that many still die of what should be a treatable disease in the 21st century. And they are not nameless, faceless numbers or statistics – in this case, they are embodied by a shy boy with a winsome smile and a bright future, cherished by his family and important to the future of his community.
In spite of AIC’s tightly woven net of support services, the myriad effects of extreme poverty, parental death, chronic malnutrition, debilitating debt, housing insecurity, lack of education and superstition ultimately proved to be too much. AIC’s work will continue in spite of – and because of – this tragic loss. In Akshay’s memory we strive to improve health outcomes so that our highest risk children can not only survive, but thrive.