ALL IS WELL THAT ENDS WELL, THE STORY OF TWO THALASSEMIA SIBLINGS SUSWATI AND ARIJIT
In 2012, Satyendra Nath Maity and his wife Rumpa Maity gave birth to a baby girl. Everything came to a standstill when they learnt of the shocking news, that their daughter Suswati is born with Thalassemia Major, a genetic disorder inherited when both the mother and father are Thalassemia Minor. Though being Thalassemia minor makes no difference to their health. But when both the parents are minors, their child becomes a Major. Suswati has to undergo blood transfusions every month since she had been six months old infant. It had been difficult for the parents to arrange for blood donors, and afford the treatment, as blood transfusions are a monthly process for Thal Major kids. The pain that Suswati and her parents had been going through had no bounds.
After consulting doctors and understanding the disease, Satyendra and Rumpa understood that the only treatment for their child was a stem cell transplant. They required a genetic HLA-matched donor for their child. Seeing the rare probability of finding a match for their daughter, Satyendra and Rumpa went ahead and planned their second child when Suswati was two years old in the hope that the sibling would be a match for their daughter.
They were economically challenged and could hardly meet their basic needs, with the treatment and the new baby coming in their second child has been Arijit, born in 2014. At first, everything seemed fine, but once Arijit was around seven months old, he also started showing the same symptoms as Suswati. Their whole life took a U-turn when the doctors confirmed that Arijit also has Thalassemia Major. The parents lost all hopes, and Satyendra says, “We were so broken down at that point, we thought there is no solution for our children, we were already not able to afford Suswati’s treatment, and now there was an additional expense of Arijit’s treatment, that came to surface.”
They met many Thalassemia society doctors who guided them on what to do. Someone told them about Dr Gaurav Kharya, Clinical lead, Bone Marrow Transplant(BMT) and CT at Indraprastha Apollo Hospital, Delhi. Dr Gaurav told them about the chances of getting a transplant from a matched unrelated donor from the DATRI Blood Stem Cells Donors Registry. India’s largest blood stem cells donor registry with over 4.63 lacs plus donors.
From there, they began their journey to find donors for Suswati and Arijit. After many years of struggle and treatment, Suswati got a donor from DATRI Blood Stem Cell Donors Registry and got her blood stem cell transplant in December 2019. In the same way, Arijit also got a donor from a DATRI Blood Stem Cell Donors Registry in March 2020. Satyendra says, “Dr Gaurav has been like God to us, guiding us and supporting us at every step of the treatment, transplant, and even post-transplant. He has been available at odd hours when we required his support.”
The parents extended their gratefulness and abundant appreciation for DATRI Blood Stem Cell Donors Registry. They said, “The Blood Stem Cell Donors from DATRI, who came forward to donate their Blood Stem Cells, have donated a new life to our children, and we will forever be grateful to DATRI and their donors for this great deed. Because of the donor’s noble deed, my son and daughter can now lead a normal life.”
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DATRI Blood Stem Cell Donors Registry a not-for-profit organisation, was incepted in 2009 to find unrelated matched donors for patients with leukemia or blood disorders whose life is dependent on an unrelated donor to survive. DATRI, India’s largest registry with more than 4.5 Lakh donors. Any healthy individual between the age of 18 years to 50 years can register as a blood stem cell donor with DATRI and potentially become a lifesaver when they’re found to be a match for a fatal blood disorder patient. For Further Details
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