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.
Sankalp India Foundation, Bangalore, Think Foundation, Mumbai and We Care Trust, Mumbai collaborated with Kokilaben Dhirubhai Ambani Hospital,Mumbai and had started a Bone Marrow Transplantation Project at Mumbai for Thalassemia patients coming from financially poor background. The project was started in April 2016 and Karan Veer Singh from Think Foundation was the project coordinator. The first child who was transplanted was about to get discharged and the second child had got admitted. At this time we had a shocking news.
The decision whether to undergo BMT might be a difficult one for many families and patients. As a general rule most children born with thalassemia who have regular access to appropriate supportive care may have a long and productive life.
At Sankalp India Foundation, We firmly believe that each child must be given an option for complete cure irrespective of their financial status. The HLA test is the first step which determines whether the sibling can be a matched donor to the child suffering from thalassemia. The cost of HLA typing in India is around Rs. 10,000/- per family making it inaccessible to most families.
"State level Consultation on Status of Thalassemia and Other Hemoglobinopthies in Karnataka" was organised by Sankalp India Foundation with the major thalassemia centers in Bangalore as co-hosts on 9th of March 2016 at Rashtrotthana Parishat, Bengaluru.
23rd March Bangalore
With the support of DKMS Germany and Cure2Children, Italy, Sankalp India Foundation has been offering free HLA typing to patients from all over the country. Several of these patients find a match within their families. Once the match is found, starts the journey of screening and preparation for the transplantation.
The first bone marrow transplantation (BMT) for thalassemia was performed in 1980, since than over 4.000 have been done, so what do we know about people who have undergone BMT many years back?
November 14 2011 saw the birth of a new commitment for volunteers at Sankalp. From a bunch of volunteers taking up emergency blood requests and organizing a few blood donation drives, we took up something more serious and potentially game changing.
Yesterday a family came to seek help for their child who is detected with thalassemia. We meet parents only on Sundays but we made an exception for this family as they had come all the way from a place 600 km away. The 8 month old baby girl had already received 3 transfusions and the family wanted to discuss the prospects of transplants. They had already visited 3 of the very popular BMT centres in the country and taken opinion. Unfortunately though the child had a sibling, his HLA type did not match.
It was around July last year when we decided to put laziness behind and initiate the Sunday get-together for Thalassemia. There was a situation where several parents wanted to meet us and have discussions about various issues faced by their children. We earmarked Sunday as a day for all those meetings with the parents, exploring the strategies to improve the management of the disorder as well as take small steps in direction of the cure.
