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“People told my parents that I would not live long. I run a small shop now”

When six-year-old Nikku was diagnosed with thalassemia major, little did his parents Yashpal and Uma Devi know that they were in for medical complications and a lifetime of periodic trips to the hospital.
 
Nikku is the pet name of Avinesh Kumar (31) who lives in the hamlet of Phalondi (population around 350) in Himachal’s Kangra district. Retired bus conductor Yashpal (56) and homemaker Uma Devi (56) have an older son Dinesh (36) who lives with them along with his wife Savita Kumari (32) and their year-old son Yakshit. The couple’s youngest, Anjana Devi (27), has completed her MA.
 
Thalassemia is a genetic blood disorder where the body does not produce enough haemoglobin, an important part of red blood cells. Thalassemia major manifests the severest symptoms, with acute anaemia for which regular blood transfusions are needed. When too much iron builds up in the blood because of the transfusions, it needs to be removed with chelation in the form of tablets and/or pumping the drug slowly through a needle in the skin. This disorder can also cause unusual bone growth such as enlarged forehead or cheeks because the bone marrow is working extra hard to produce red blood cells. A bone marrow transplant has a very low success rate and carries several risks besides.
 
Nikku was sickly from the age of six months, getting frequent nosebleeds as well, and his parents didn’t know what was wrong. When he was a toddler, Uma Devi would drop him to the local anganwadi (government-run crèche) and pick him up. Then he started going to the village government school along with his brother and sister. After his diagnosis at age six, they took him for blood transfusions every week or fortnight to Dr Rajendra Prasad Government Medical College and Hospital in Tanda, less than 12 km away.
 
Because of his anaemia, Avinesh was weak and perpetually tired. He walked very slowly and couldn’t join the other children in their games. He missed school so often that teachers told the couple not to send him anymore. “What will you gain by educating him?” they asked. “He will never be cured.” People also murmured “he will not survive” but the couple paid no heed to their comments. “We did not want him to feel that he is any different from other children,” they told us. Uma Devi added, “I was happy that he was able to walk, which many others can’t. He could at least watch the other children play.”
 
Avinesh not only finished school but also completed his BA! But this was not achieved without a great deal of discomfort and suffering, over and above the blood transfusions and chelation that have to be continued throughout his life. In his final year of college in 2013 he had a medical setback that couldn’t be treated in Tanda, and he had to be transferred to the Dayanand Medical College and Hospital in Ludhiana. Around six years ago a “wrong blood transfusion” caused swelling in his entire body, which lasted for almost a year.
 
Uma Devi told us that Avinesh recently underwent a splenectomy (spleen removal), which has reduced the frequency of transfusions to once every 45 days. In a person with thalassemia major, the spleen becomes enlarged as it tries to produce more red blood cells and it cannot do its regular job of filtering blood and fighting infections.
 
One can fully understand why Avinesh sometimes gets disheartened and thinks, “Why did this have to happen to me?” However, an NGO has come to his aid in more ways than one. An ASHA worker told the family about the Chinmaya Organisation for Rural Development (CORD) which also works with the disabled. Avinesh has been attending their meetings and counselling sessions. Around two years ago with the support of CORD he opened his own shop in the village. His services include photocopying, lamination, passport photo, PAN and Aadhar cards, and helping people fill in online forms for government schemes.