Neurosurgeon Christopher Gerber examines Namrata Saha. Picture by Amit Dutta

Namrata Saha goes to school, sings at functions and lives a normal life, never betraying the chilling fact that a part of her skull rests in a hospital refrigerator 10km away from home.

The bubbly 10-year-old girl suffers from moyamoya, the Japanese name for a rare disease in which the affected part of the brain looks like “a puff of smoke”.

Doctors had removed part of her skull —10cm in diameter — in April and the Class VI student of Ballygunge Siksha Sadan will have the “bone in her head” reinstated in September.

Namrata’s ailment was detected after she suffered bouts of excruciating headache and neck pain in March this year. During such seizures, she used to throw up.

“She used to cry in pain and painkillers were of no help. We took her to a doctor when the headache stayed one whole day,” mother Ruma Saha said.

A CT scan showed “a puff of smoke” on the right side of her brain’s frontal lobe. Namrata was admitted to the Institute of Neurosciences at Mullickbazar and investigations revealed that she had suffered a haemorrhage.

The girl had a stiff neck because blood had trickled down the spinal cord.

Doctors warned that the disease might turn fatal because lack of blood supply could trigger a stroke, epilepsy or convulsion.

“The exact cause of the disease is not known. It’s congenital and usually manifests in early childhood or adolescence,” neurosurgeon L.N. Tripathy said. “If left untreated, it can affect other areas of the brain,” he added.

The major arteries supplying blood inside the brain become narrow in people suffering from moyamoya.

In Kasba resident Namrata’s case, doctors were reluctant to risk a surgery because of the haemorrhage she had suffered. “We had to put her on medication for the clot to dissolve,” said Christopher Gerber, consultant neurosurgeon who performed the surgery along with endovascular surgeon Sukalyan Purkayastha.

Her condition turned critical to extremely critical when she suffered a stroke in hospital, which paralysed the left side of her body.

On April 8, the doctors conducted a five-and-a half-hour surgery, erased the painful memories of her headaches and kept aside a piece of her skull (to be reinstated later).

“A portion of the skull was removed to make room for her swollen brain. There are layers of membranes and skin but she has to be careful not to hurt herself,” said her mother, quoting the surgeons.

She is careful and makes sure that nothing touches the vulnerable part of her head. In fact, she feels safe at school as her classmates form a protective ring around her in class and during recess.

She watches cricket, drools over Dhoni, enjoys chocolates and reads fairy tales.

Namrata sang a chorus at a school function last Monday, barely a fortnight after returning to class. “We sang Words, one of my favourite songs,” she said.

Her parents were initially reluctant to send her to school after the surgery. “We were scared that she might get hurt. Then we spoke to the school authorities and they promised to protect her,” Ruma said on Wednesday.