Son of Afghan Sikh refugee treated with father’s half-matched stem cells

When two-year-old Kulraj Singh, son of a Delhi-based refugee couple from Afghanistan, frequently showed up unexplained infections, unexpected bleeding and fatigue, his parents Sajaan Singh and Gurmeet Kaur did not know he was suffering from a life threatening genetic bone marrow disorder.

Thanks to doctors at Narayana Health City and monetary help from his community heads, the boy – who was diagnosed with Amegakaryocytic Thrombocytopenia (AT) evolving into Aplastic anaemia – has now got a new lease of life.

Sunil Bhat, Head, Paediatric Hematology, Oncology and Bone Marrow Transplant (BMT) unit in Narayana Health, who treated the boy with a BMT, said the father’s stem cells that only half-matched with his son’s were used. "This is India’s first haplo-identical stem cell transplant using TCR Alpha/ Beta depletion for this condition," the doctor claimed.

Gurmeet Kaur, the boy’s mother, said waiting in long queues in the All India Institute of Medical Sciences (AIIMS) to get platelet transfusion for their son had become a regular affair till doctors concluded that the boy required a BMT.

"We were refused treatment in AIIMS and another top hospital in Delhi because we were unable to bear the high cost. Besides, the non-availability of a matching donor was a major hitch," she said.

Undeterred, the parents filed a public interest litigation seeking free treatment for their son, who is four years now. Following this, Devi Shetty, Chairman of Narayana Health, offered to provide free treatment at Mazumdar Shaw Cancer Centre.

Dr. Sunil said the child was brought to the hospital two months ago. "But as we did not find a matching donor, we had to go ahead with the father’s stem cells (that matched only fifty per cent) as the boy’s condition deteriorated.

Sharat Damodar, head of BMT Unit in the hospital, said the boy was fit to be discharged now. "As he will be on immunosuppressive drugs for the next six months he cannot go to school till then," he said.

Disease

AT is a condition in which platelets are not produced in the marrow and patients have life threatening bleeding manifestations. It can evolve into Aplastic Anemia wherein marrow fails to form all the blood components.

Symptoms include unexplained infections (due to fewer white blood cells), unexpected bleeding (due to fewer platelets) and fatigue (due to fewer red blood cells). The only curative treatment available for this condition is blood and marrow stem cell transplant.