There is an air of despair at the residence of the Ingavle family. One of the youngest members of the lower middle-class family living in a rented house at Wakad in Pune is suffering from a rare fatal immune disorder.
Hrishi, who is currently under treatment at Mumbai’s Bai Jerbai Wadia Children’s Hospital in Parel, is diagnosed with chronic granulomatous disease, a rare genetic disease that affects one in two lakh children. Due to his illness, Hrishi is prone to life threatening infections and hope for longer life is in form of a bone marrow transplant at a cost of Rs25 lakh at Chennai’s Apollo Hospital.
The family is resolute in its fight to save Hrishi, but is being held back by a financial crunch. His father, who works in the maintenance department of a steel plant, is the sole earning member in a family of five with an annual income of Rs2.5 lakh.
“We don’t own a house, but we have a piece of ancestral land. If nothing works out, we will sell it to save our child. I don’t think I need to explain to any parent how it feels to lose their child; This is a genuine request to all, please help us save our child,” appealed Hrishi’s mother Archana.
Recalling her struggle, Archana said it began a month after Hrishi was born in October 2007. “He had high fever and was diagnosed with pneumonia. After that episode, he was always sick and hospitalized for the next one-and-a-half years,” Archana said.
“All tests were tried; even cancer, but no one could diagnose it. It was after 18 months that a friend referred me to Mumbai’s Wadia Hospital where he was diagnosed with this rare genetic disorder,” she added. Doctors told her that marriage within family, such as her marriage to her first cousin, increases chances of such genetic disorders in children.
Hrishi was started on heavy antibiotics and anti-fungal medications, but it didn’t help as the boy kept getting recurrent infections. “We were so scared for him we stopped going out. He cannot be sent to school or even taken to a mall or wedding as he can catch an infection anywhere and we don’t know which one will be life-threatening,” said his distressed father, Anil.
Doctors told Ingavles that bone marrow transplant was the only hope for Hrishi. They advised a second child, as sibling has best chances to be a perfect bone marrow donor match.
“To save Hrishi, we planned a second child and I delivered in December 2011. My bad luck that the bone marrow of my second child didn’t match with that of Hrishi. We lost hope, but then doctors told us of a miracle. An unknown unrelated person whose bone marrow is matching 10 on 10 with Hrishi was found on donor registry and is willing to donate,” said Archana.
The couple is busy with Hrishi’s complications that they have no time to even name their second child.
Dr Revathi Raj, pediatric hematologist at Chennai’s Apollo Hospital where Hrishi was referred by doctors at Wadia Hospital for transplant, said it was a rare case to find such a perfect match in unrelated donor.
“This is basically a disease of white blood cells that fight infections which are deficient in his case. In mild cases, antibiotics help to ward off infections but Hrishi needs stem cells transplant. The surgery is scheduled for end of February at a minimum cost of Rs25 lakh,” she said.
Senior paeditrician, Dr Ira Shah, at Mumbai’s Wadia hospital is travelling and couldn’t comment. Research officer at the hospital’s immunology department, Dr Anita Dhanrajani, said that sooner Hrishi gets the transplant, the better.
“He cannot live for long without transplant. Every minute counts in his case,” she said.
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