Bengaluru boy with rare disease meets his German stem cell donor

Bengaluru: It was a heart-warming moment as an Aplastic anemia survivor from Bengaluru virtually met his blood stem cell donor from Germany for the first time.

The meeting was organized by the non-profit organisation DKMS BMST Foundation India, dedicated to the fight against blood cancer and rare blood diseases, such as thalassemia and aplastic anemia.

Twarit, 11, had a difficult childhood after being diagnosed with Aplastic anemia — a rare blood related disease that occurs when the body stops producing enough new blood cells — at the age of nine.

Twarit required a stem cell transplant to survive and was fortunate enough to find his “lifesaver” — Duc Pham Ngoc –, a 26-year-old German Economics professional who donated his blood stem cells and gave this little boy a “second chance at life!”.

As per the international guidelines, the identity of both the blood stem cell donor and recipient are kept anonymous for a period of two years and thereafter upon interest they are introduced to each other, according to a Foundation statement.

Twarit”s treating physician and one of the panellists in the virtual event, Director and Clinical Lead, Pediatric Hematology, Oncology, and Blood & Marrow Transplantation, Narayana Health City, Dr. Sunil Bhat, said for a successful stem cell transplant, an HLA (Human Leukocyte Antigen) matched donor is required.

“About 30 per cent of the times HLA matched donors will be available within the family; however, in the rest, we have to look for a matched ”unrelated” donor. Chances of finding a fully matched unrelated donor is one in a million; hence, having a large pool of unrelated donors is required to be able to find a matched donor for a patient.”

Duc registered as a potential stem cell donor with DKMS Germany in 2013 at the age of 18 and after six years he was found to be a match.

Sharing his journey of being a “lifesaver”, Duc said, “when I got the call asking if I would donate my blood stem cells, I was surprised. I felt overjoyed to know that my receiver was a little boy with his whole life ahead of him. My little contribution, which only took a few hours of my effort, had such a big impact on him.

And today, even though it was through a virtual medium, I felt so proud to see him healthy and doing well. If the pandemic hadn”t struck, I would have wanted to visit India and meet Twarit in person”.

CEO of DKMS-BMST, Patrick Paul, said every five minutes someone in India is diagnosed with blood cancer and rare blood diseases, such as thalassemia and aplastic anemia.

“For many patients, the search for a matching blood stem cell donor is the beginning of a race against time”, Paul said. “Our focus is always on registering as many committed donors as possible. So far, DKMS-BMST has registered over 50,000 potential donors and has helped 41 patients with a second chance at life.”

Sharing their experience, Twarit”s father Atul Srivastava said, “We felt helpless when Twarit was diagnosed with such rare medical condition. However, we were given a light of hope after meeting Dr. Sunil Bhat, who assured us how a blood stem cell transplant can save Twarit”s life and then we began our search for an unrelated blood stem cell donor.

We were fortunate to find a match for our son within few months through DKMS. There are no words to express our gratitude to Duc for saving our child”s life.”