An unmatched gift to a stranger

Garwit Goel, a two-year-old from New Delhi has a story that is a beacon of hope for many. He was battling thalassemia and the cure was not easy to come by. Garwit needed a transplant of cells that would enable the bone marrow to form new blood cells. But finding the match was easier said than done. Testing showed that Sumeet Mahajan, a software professional from Bengaluru, can be his unrelated blood stem cell donor. Following a stem cell transplant from Sumeet, Garwit was declared free from the blood disorder. This then has been reported as the first adult unrelated transplant from an Indian registry to cure thalassemia.

It’s not just Garwit, there are many who have received a fresh lease of life through DATRI, a blood stem cell donor registry.

Spearheaded by Bengaluru-born Raghu Rajagopal, it works towards creating a wide and diverse database of potential donors who can be accessed by any patient, living anywhere in the world, in need of a stem cell transplant. A non-profit organisation, it has been saving lives of those suffering from leukemia, lymphoma, thalassemia etc. Raghu Rajagopal, along with his team, gives a chance to many who probably had given up hope.   

Raghu says, “I was born and brought up in Bengaluru, did my engineering from BITS Pilani and then moved on to become an entrepreneur in the US. It was during that time that I heard of someone who was suffering from blood cancer in the US.

Unfortunately, the family’s hope of finding a stem cell donor was not working out. The patient was of an Indo-Pakistani origin and couldnt find her match in the US registries. Since I had people working across different states in the US, we did a lot of awareness drives. I realised that ethnicity plays a very important role in genetic matching.”

Later in 2005, Raghu returned to India and in 2009, tied up with Dr Nezith Cereb and Dr Soo Young of Histogenetics to launch DATRI. It was not easy and the bottlenecks were many — mainly funds to start with. An optimistic Raghu, however, got it together. “Dr Nezith and Dr Soo agreed to charge us Rs 2,500 and long-term credit. We soon started creating awareness in colleges, among corporates, took up donor drives,  started recruiting volunteers and registered patients looking for matches.”
“Our donor pool was very small and the matches were rare. So it was only after two years that we could organise the first stem cell donation,” he says. “It is not the blood group but the genetic matching that is necessary,” he adds. The blood stem cell donation is for those with fatal blood disorders but he points out that genetic matching does not happen easily. 

Things have come a long way since 2005, people are a bit more aware about such registries. But more needs to be done, says Raghu. “As of now, we have 94,000 donors and we have facilitated 110 transplants. It was in 2011 that we got our first transplant done. Now, there are patients suffering from leukaemia, lymphoma and thalassemia in our registry.” He points out that more than 10,000 babies in certain pockets of North India and Tamil Nadu are suffering from thalassemia but have no exposure to medical facilities.

“In India, getting more donors is a major hurdle. This is because there are a lot of decision-makers for a person, including parents, siblings, friends, family doctors etc. Even when one is ready to donate one’s blood stem cells, there are people who will discourage the person. So when a donor comes to us, I tell them, ‘Take me to your parents’.”

   “This is not an organ donation. It is an outpatient procedure. Blood is drawn from the right arm of the donor. It is then passed through a machine that harvests the blood stem cells, and sent back into the donor’s body through their left arm. It is a very safe procedure,” he explains

In Bengaluru, the hospitals we are associated with are Narayana Hrudayala and BGS Hospitals,” he explains.

The DATRI team is committed and looks forward to more donors. “We need support from the corporates, software companies and mutinationals to create an awareness on this. There are around 2,000 patients waiting for donors in our registry. The registry could facilitate those in the lower-middle income group also. If hospitals come forward to sponsor them, they can also avail the benefits of this.”

At the moment, there are more Garwit Goels looking for donors and hope is just a thought away.