Technically, it was not a celebration - but we could not think of a more meaningful way. We thought inching a few children closer to better care and treatment could be a nice way to express the feelings on the Republic Day.
Republic Day 2014 was celebrated by Sankalp India Foundation with 25 young kids who are putting up a stiff fight against Thalassemia at Samraksha - the Thalassemia Day Care Center at Rashtrotthana Parishat. For past few months we were working on bringing the necessary mechanism to offer a critical medical test to these children. Persistent effort is the key to solve any problem and we found the solution. The day before the Republic day was spent in making several calls and getting things in order to being together staff, volunteers, families and whatever else was needed to get tests done.
Beside samples collection, the morning was spent speaking to the families to understand their socio-economic condition and needs. ThalCare, the software tool which we use for thalassemia management was updated and the road-maps for treatment for individual kids was laid out for the weeks ahead.
It was just a few months ago when we were concerned about blood transfusions whenever we saw the children. The outcome at Samraksha is there to see - already. From Independence day to Republic day the most prominent change is that in baseline pre-transfusion hemoglobin (from 4-6 gm/dl to more than 9 gm/dl). Today the discussion on the table is different. We are talking about complications arising from prolonged transfusion therapy. We are looking at enabling specialised consultation with endocrinologist, cardiologist and gastroenterologist on an immediate basis.
We are grateful to the management at staff at Rashtrotthana Parishat for bringing together Project Samraksha. We are confident that working together with them, the gaps in the management of thalassemia for kids irrespective of their financial status will be narrowed upon and finally closed.
Republic Day 2014 - we will remember this day as another milestone in the direction of safety, health and well-being for our children. Republic day - for them this year - will have a very deep meaning.