“He can’t lose any blood, so we have brought him up carefully. Even though he is used to the needles and the pain, he still tries to run away when we come to the hospital. It breaks our heart to force him to go through this regularly. But after crying for a bit, he quietens down and endures it.” – Bande Navad, father
5-Year-Old Ajalen Only Remembers A Life Of IllnessUntil he turned 2, Ajalen seemed perfectly healthy to his parents. It was in the summer of 2019, that the family was in Bijapur and little Ajalen fell very sick in the raging heat of that region. He had boils on his lips and a high fever. His parents concluded that it was the heat making him sick and took him to the hospital for a regular checkup.
“When medicines did not help, the doctor asked us to get some blood tests done. That is when we found out that he has a blood disease. The doctor said we needed to give him blood. When we started, he needed blood once in three months. Now he needs blood twice a month. Because of the frequency of these transfusions, he has a problem in his liver and his stomach is swollen.” – Bande Navad
His father spends more than half his monthly income getting him blood transfusionsAjalan has a severe form of Thalessemia major and requires regular blood transfusion. Bande Navad has to choose between going to Bagalkot, which is 80 kms away from his hometown, with his sick child, or spending a lot more money for treatment at a private hospital. Bande Navaz is a mechanic who has been sacrificing everything just to keep Ajalen’s monthly treatment going. Sometimes, he needs to spend his entire month's income of Rs 8,000 on treatment alone. His employer, family and friends have helped him keep the treatment going so far.
“We used to go to Bagalkot, but the hospital and the labs and the blood banks are all far from each other. It is also very hard because we don’t know anyone, and the people don’t seem helpful. Besides, I have to take three days’ leave to complete his treatment. Here in Jamkhandi at least, we know people and they help us out.” – Bande Navad
Quiet, thoughtful Ajalen awaits a procedure that will help his condition
“He is not like other kids. He doesn’t cause mischief like his little sister or his cousins. He quietly plays by himself, often making videos on the phone. We are scared to even admit him to school. What if the other children bully him? But the doctor in Bangalore said we can get him a surgery that will help. Maybe after the surgery, he can live a normal childhood.” – Bande Navad
Ajalen’s 3-year-old sister is a match and her stem cells can be used for Ajalen to undergo a bone-marrow transplant. At the moment, he is not healthy and his life is fraught with danger. Not only will the procedure improve Ajalen’s health, but will also give him a chance to experience the joys of childhood, that he has had to miss out on.
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