Bengaluru: “My four-year-old is fine by God’s grace and the doctor’s expertise,” said an elated Saajan Singh, father of young Kulraj, a Sikh refugee from Afghanistan. Earlier he was denied treatment at top medical institutions in the country due to the huge costs involved.

Regarding Kulraj’s disease, Saajan said, “When Kulraj was one year old he had spots on his legs after which we took him to the doctor and then began the long drawn ordeal of tests and medicines.”

Kulraj’s family took him to Gangaram Hospital and then to AIIMS in Delhi, where neither the medicines nor injections worked. Saajan said that at AIIMS they were told to get bone marrow test done.

The hospital authorities also told him that undergoing bone marrow transplant was costly and finding a donor was also difficult. Kulraj was suffering from Amegakaryocytic Thrombocytopenia evolving into Aplastic Anemia, a disease in which the bone marrow is unable to generate mature blood cells.

“Amegakaryocytic Thrombocytopenia is condition where the bone marrow does not make platelets and also the bone marrow is unable to generate mature blood cells, both red and white.

Hence it has life-threatening manifestations,” explains Dr Sunil Bhat, Senior Consultant and head Pediatric Hematology, Oncology and Bone Marrow Transplant Unit at Narayana Health City.

The patient is always under the risk of bleeding and also the risk of infections being high, he added.

Surprisingly after this surgery Kulraj has become the first child in Asia to be cured using an advanced and new haplo-identical stem cell transplant technique.

The family also faced the problem of finding a matching donor. His parents and elder brother underwent human leukocyte antigen (HLA) tissue matching test.

Unfortunately they did not match. As a next step, donors were looked-up at the public stem-cell registries, but even there they could not find a matching donor.

“The option we were left with was to go ahead with half match transplant, which made us perform India’s first haplo-identical transplant using TCR Alpha/ Beta depletion for this condition. This is an advanced BMT technique for haplo transplants known for potentially better treatment outcomes.”

“It gives me immense pride that the BMT team did their best to treat the little boy. It is the right of every patient walking into the hospital to have access to the best of medical advice,” said Dr Devi Shetty, Chairman, Narayana Health.

“I am so happy that this ordeal is over for my baby and he is fine now,” Saajan said. Regarding the prevalence of the disease, Dr Bhat said, “It is not a very common disorder and mainly affects children in the early years.”