3-year-old boy cured of rare gene condition in Mumbai

Last year in October, when his weight dropped to 8kg from 12kg, he was referred to a city-based haematologist, who diagnosed him with a rare genetic condition of the immune system.

At the age of three, Durvankur Alkunte, a resident of Nashik has fought repeated bouts of diarrhoea and fever.

Durvankur Alkunte is now recovering and doing well. (HT Photo)

Last year in October, when his weight dropped to 8kg from 12kg, he was referred to a city-based haematologist, who diagnosed him with a rare genetic condition of the immune system, chronic granulomatous disease (CGD). The disorder had his immunity in a compromised state making him susceptible to infections.

A bone marrow transplant was conducted at an Andheri hospital in December 2017. However, since he developed complications, he remained in hospital and was only discharged 10 days ago. The cost of the treatment – Rs70 lakh – has left his family in a dire financial situation. Doctors said the awareness about CGD is very poor as it affects one in three lakh children.

“He was having multiple infections and had been treated with multiple antibiotics earlier. Although he was already diagnosed with CGD, we suspected Crohn’s disease, but an endoscopy and biopsy ruled that out,” said Dr Santanu Sen, consultant, paediatrics and paediatric oncology, at Kokilaben Ambani Hospital, who treated him.

“Eventually, a blood test revealed that he was infected with a rare bacterial infection Nocardia, in his intestine, which caused a lot of blisters under his skin,” Dr Sen said.

Finding a donor wasn’t easy. “In Durvankur’s case, his father turned out to be a half match. Although half match transplants lead to complications, we went ahead with the transplant as it was his only chance of survival,” said Dr Sen. Doctors gave him chemotherapy to destroy his defective bone marrow.

Durvankur’s father, Sanket Kumar Alkunte, 40, a dentist, said that he used all his savings to pay for the treatment. “He is doing well, but still needs antibiotic injections every day,” he added