He may just pass on as just another man from the hinterland of Bihar when you first see him. Vijju’s looks of-course don’t give out the determined and courageous soul inside. He is the father of little Chetan - a child from Bhojpur, Bihar who suffers from thalassemia. He is a man who did not let limited financial means, travelling long distances and pressure from his family come in the way of ensuring that good treatment was available for his child.
Each month, the father and son embark upon a journey of 2000 km in general compartment of the train to come to our centre in Bangalore for treatment.
We hated to see the them travel all the way. A few years back we made arrangement for them to receive transfusion at a well known centre closer to their home. Two months later, they were back in Bangalore. After repeated attempts to organise the transfusions closer to home did not keep them from deciding to come back to Bangalore - the father had just 1 thing to say. He said that the child does not get transfusion associated reactions in our centre which happen every single time elsewhere.
Vijju has aged parents at home. He is the breadwinner for a family of 7. Each time he ventures out to bring the child to Bangalore - he faces the wrath of the family - which believes that he should have let go of the child long back. Chetan has a healthy sibling - why then should the family suffer to treat a child who they consider a burden? Vijju refused to give up to the pressure. We asked him if he could relocate to Bangalore. He was concerned about how his parents would be looked after if he made that decision.
Recently, Chetan’s ferritin trend showed an upward movement. The child receives chelators free of cost and yet, for several reasons he was not chelated adequately. We offered to give 4 weeks of deferoxamine together with deferasirox to them. After brief consideration, the father agreed.
All hell broke loose at home. The family thought that he is going just too far. The father suffered silently in agony. Just around the same time an email came with certain HLA reports. The volunteer involved was overjoyed. Chetan has a match - and therefore a chance for cure! The same message was shared with the treating staff and the father.
When we met the father, we expected to see him bubbling with joy. We found him staring at the buildings far away through the windows when we met - with a blank expression on his face. He was worried. He was concerned. The news of a match brought in the concerns about the money involved and the tense situation he would face in his social circle.
His exemplary determination was shaky. As we spoke to him for the next few minutes - counselling him about the risks, benefits, procedure, challenges and options, on the back of our mind we knew that at least for this one child, the society will come together behind us to not let money come in the way of cure.
Many times, the silent suffering that family members of the patients undergo is heartbreaking. It’s a slow and painful fight against the horrible impact of thalassemia on the patients and families alike. Small, persistent, well thought out and committed steps, we hope, will be the best way forward for this child and all the others.
The name of the patient and the father have been been changed.