Victory against all odds

The Sunday Diaries Little stories from our day care centers

Sundays are busy at Samraksha. Several families are there for the weekly therapy and counselling. Some are there just to chat about the upcoming transplantations scheduled for their children. I had a message delivered to me today by the mother of one of the children who had undergone transplant today.

This is a very special family, parents and three little girls, two of whom are thalassemia majors. The family migrated to Bangalore from Bihar after they failed to get even the diagnosis right for their children in the long excruciating struggle they had. The doctors kept treating thalassemia for their little ones with blood transfusions and iron supplementation – calling it iron deficiency anaemia. The youngest of the three siblings happened to be the first child who found a match in the HLA typing we organise way back in 2012. The eldest girl was the healthy sibling donor. It was a long road towards transplantation for the family as they and even we took baby steps to achieve was initially looked impossible – a safe, reliable and affordable bone marrow transplantation.

Hers was one of the first BMT supported by us last year in Jaipur. The family has to undergo a lot of problems. The eldest sibling, who was then just 13 years old, assumed the role of her mother and took care of her sister while the mother and the youngest child went in for the transplantation. The family had struggled hard to gather support from all sources. The father is a factory worker while the mother is a grade 4 staff in a small school. She also works as a maid in several homes. The family received some support from everyone around them.

The transplantation happened successfully and the family was back in Bangalore once again. This is the time when they received the second good news that even the second child had a match with her elder sister. Nevertheless, life had changed. Expenses for the transplantation and the support from the community – both led the lady in the family to put in extra work for each of her employers. Even now, from morning to evening she works, while the three little girls take care of each other all by themselves.

Coming back to the message, it was from the little one.

"She had insisted upon her mother to carry it for her to me. With moist eyes, the mother told me how she could not wait to send me her report card. "

People who know about bone marrow transplantation know that post BMT children are kept away from school for several months. Usually, they end us wasting 1-2 years of education. This child was away from school whole of last year. She was fed and taken care of by her school going sisters. One would not normally expect to see any kind of academic report card. However, there it was. The mother had requested the school to allow her to study at home and just appear for the exams. And guess what, the mother did not hand me one, but 3 report cards – one from each of the sisters.

I glanced through. All I could find is Excellents and Very Goods – in each one of them. Last few months raced through my mind. It was an overwhelming moment. The mother told me that the little one wanted me to know that she had got excellent grades just by studying all by herself. Not just her, the other two little girls who had gone through so much had also managed to keep their academics sky high. Of-course the parents were very proud. So are we.

It was one of those moments when all questions regarding the sustainability of thalassemia management interventions we seek are put to rest. All we can see are the little ones. It reinforces all that we plan to do and can do to ‘give each life a better chance’.

Sankalp Unit: