It was a ‘personal and selfish’ reason that turned into a crusade for this Springfield, Il based father. Kiran Desai’s single most driving force in life is to see the day when every Indian in need of a bone marrow transplant, has a matching donor that will save his or her life.
When his son Krupal (then 14), was diagnosed with blood cancer (Acute Myelogenic Leukemia) in 1999, and was possibly in need of a bone marrow transplant, he realized that getting a matching donor was a next to impossible task. There were just 8000 South Asians registered in the National Bone Marrow Registry, while the chance of finding a potential match was one in 100,000 and around one in 20,000 within the community. He got in touch with Temple, Texas based surgeon Dr Vijay Mehta, and together the two held drives and started raising awareness of bone marrow issues at community events. Fortunately, Krupal recovered after chemotherapy and did not need a bone marrow transplant. But the anguish and anxiety that the family went through during his illness led Desai to devote the rest of his life to the cause.
"When a family goes through something like this, two things happen,” says Desai. “Either the patient dies and the family wants to forget about the painful subject or the patient recovers, and the family moves on and doesn’t want to deal with the subject.”
But Desai and his wife Kalpana decided to be different. “Our children were dying. Kalpana and I decided to do something about it.”
They started holding weekend drives at community events in Springfield, Il. Soon the drives spread to other cities.
Today, Desai’s Asian American Bone-Marrow Foundation has 200 volunteers in various cities around the US. Drives are held at meetings of regional associations like AAHOA, TANA, Gujarati Samaj etc. and at any event that the community flocks to.
“We’ve held drives even at weddings where the only gift the bride and groom wanted was for people to register,” says Desai.
The zeal of people like Desai and Dr Vijay Mehta have started to bear fruit. From just 8000 people just a few years back, there are over 65,000 South Asians registered in the National Bone Marrrow Registry (NMDP) today.
“More and more people are finding partial or complete matches,” says Desai. “But more people need to come forward and register. For every person who finds a match, there are still 15 who don’t.”
There are currently 100 South Asians waiting for a match in the US. Caucasians are more likely to find a potential match in the registry. There are close to four million Caucasians registered in the NMDP, and each Caucasian patient in need of a transplant finds many perfect matches. Desai dreams of a day when every Indian in need of a transplant will be saved from a perfect match in the registries.
“All it takes is five minutes of your time,” Desai appeals to the community. “People have misconceptions that the process is risky or painful. These days, all it takes is two hours of your time, if you get called from the registry as a potential match. The donor initially gets a shot to increase his stem cells. A week later, stem cells are drawn from the arm in a simple procedure that takes just a couple of hours. The donor’s body makes up the stem cells within a few days. And the whole procedure is at no cost to the donor.”
Desai’s passion led him to take early retirement from his job as technology manager at an educational agency in the Springfield Public Schools System. His zeal takes him regularly to India where he holds periodic drives, and works with the top oncologists there to raise awareness
on bone marrow issues. He dreams of setting up registries in India (for a country of one billion people, there are currently very few registries and registered donors in India).
“Most of our people live in India. Since registries around the world are interlinked, a donor in India can benefit anybody around the world,” he says. At the time of this interview, Desai had just returned from a trip to India, where he was invited to stay with a top oncologist in Mumbai. “I saw so many patients heading towards a bone marrow transplant,” he says.
Given the growing number of such cases in India, and the constraints and lack of passion in registering as a donor, Desai speaks of the importance of setting up cord blood banks. “The placenta of a new born baby is a rich source of stem cells,” he explains. The main advantage of cord blood is that it doesn’t have to be a perfect match, especially for young patients. Secondly, cord blood does away with the process of contacting a donor if he/she is found to be a match, or of harvesting his/her marrow. “A placenta is thrown away anyway,” he says. “I hope that soon every Indian woman will talk to her gynecologist about donating the placenta of her new born.” Currently, there is one cord blood bank in India run by
Reliance Life Science (http://www.relbio.com/).
Sharing Desai’s passion is his wife Kalpana, who he says, is the driving force behind raising awareness in the community. “She speaks with more passion that comes from being a mother who has been through it all,” says Desai. Krupal is currently a third year Engineering Student. He addresses some of the gatherings too, but mostly his parents try to keep him away, as they try to give him his lost years back.
Kiran Desai’s Asian American Bone Marrow Foundation can hold drives in any city of the US. All it takes is for the organizer to bring people together. Everything else is taken care of by the foundation.
“You don’t have to die in order to save a life through organ transplant,” says Desai. “You can save a life by giving just five minutes of your time.”
To hold drives please contact Kiran Desai at 217-899-3110 or via email at firstname.lastname@example.org or by writing to:
Asian American Bone Marrow Foundation
PO Box No.5403
Springfield, Il 62705
More information about the donation process for Blood Stem
Cell transplant is detailed at http://www.marrow.org/DONOR/steps_of_donation.html.