Editorial

The care giving to donors does not end with the donation process. Since 2009 volunteers of Sankalp record details of adverse events in blood donation drives. A standard form which records donor contact details, complication details is filled and maintained digitally.

21st January was a landmark day. It was the day when we discharged the 10th children from Sankalp-People Tree Center for Pediatric Bone Marrow Transplantation. The center which was inaugurated on 27th August 2015 has cured the first 10 children from thalassemia.

Although born and raised in Chennapatna, the town of toys, Syed Fahim’s childhood was not a joyous one. His life was different form the other little kids he met in school. Every month, he had to travel to Bangalore – 60 kilometers away from home – for a pint of blood, the only thing his body couldn’t produce.

Dear Readers, We are happy to share the 6th volume of Sankalp Patrika with you. We took upon ourselves what seemed to be like a herculean task to prepare a 16 page newsletter every month way back towards the end of 2010. As we look back, we are very happy we decided to take that step. Sankalp Patrika has helped us connect far and wide.

While the clamour to declare thalassemia as a disability grows around the country, year 2015 has brought realisation and reaffirmation to the long held perspective that we have at Sankalp India Foundation for thalassemia. As part of the counselling and motivational exercise, also as part of the speeches and the writings in the books, often the thalassemia families are told that their child should

Offering HLA typing far and wide We started on a journey traveling the length and breadth of the country in the month of October to reach out to families suffering from thalassemia who have never explored the option of cure. The prohibitive cost of HLA typing makes it out of reach for most families and thus the option of cure is also far from being explored.

Sundays have had a different meaning altogether for Project Samraksha, the Thalassemia Day Care Centre at Rashtroothhana Parishat. While the rest of the world enjoys their day off from work, the staff of the blood bank and the day care center put their best foot forward to work on their busiest day of the week.

It is well known that children suffering from thalassemia need blood transfusion and iron chelation every month. While the suffering and pain is borne by the child, the financial implications of this regular routine are quite demanding for many families.

1st October is celebrated as National Voluntary Blood Donor’s Day in India to mark the birthday of Dr J G Jolly who is believed to have spearheaded the movement to promote Voluntary Blood Donation in the country. Several voluntary organizations across the country marked the day with blood donation drives and other celebrations including felicitation of regular donors.

A new hope, a new silver lining has surfaced for little children suffering from the pain and burden of thalassemia. A new Bone Marrow Transplantation unit (BMT) with an exclusive focus towards treating thalassemia children has been jointly established by Sankalp India Foundation, Cure2Children and People Tree Hospitals at Bengaluru.