Seven-year-old Shaili has never been to school because she was teased mercilessly for her unusual appearance, which is the result of a rare disorder she suffers from. But now, she is receiving corrective surgery under craniofacial surgeon Dr Krishna Shama Rao in Bangalore.
And that is thanks to help from Being Human - The Salman Khan Foundation, a Mumbai apparel company's corporate social responsibility wing that the film star is associated with.
Because of Crouzon syndrome, a genetic disorder that affects one in every 5,000 people, Shaili's eyes would pop out of their sockets and had to be put back in with the help of a cloth.
According to Rao, Crouzon syndrome is a haphazard gene mutation characterised by the premature fusion of certain growth centres in the skull bones, leading to pressure on the brain and wide-set, bulging eyes. The most common complication is blindness caused by shallow eye sockets. It can also cause hearing loss and dental problems.
In very rare cases, it might lead to death.
Shaili's father Pintu Kumar, a security guard with a private firm in Gardanibagh, has been trying to get her treated since she was 3 years old.
"I took her to various hospitals, both private and government, but I was told they don't have the facilities to treat her. After some time, I gave up all hope. One of the tenants in the building where I work took Shaili's picture and posted it on Facebook, imploring people to help the child," Pintu said.
Khushboo Sinha, a programme associate with Try, a Patna-based non-government organisation, came across the picture. The NGO took Shaili for an evaluation to Indira Gandhi Institute of Medical Sciences, where eye department head Dr Vibhuti Prasad Sinha evaluated her.
"I noticed that Shaili had shallow eye sockets and visibly advanced glaucoma. An eye surgery in her case would have been very risky and might have led to complete loss of vision," Vibhuti said.
He advised Try to take Shaili out of the state as there are no facilitates for such an operation in Patna.
Khushboo also contacted All India Institute of Medical Sciences-Patna but was told that the hospital would have to invite doctors from Bangalore to operate on Shaili for which the cost would be nearly Rs 20-Rs 25 lakh.
"One of my friends advised me to contact Being Human," Khushboo told The Telegraph. "We received a positive reply within 10 days and they referred us to Bangalore's Dr Krishna Shama Rao. A team of five doctors performed the first surgery, where they reconstructed Shaili's forehead, in July 2016. Her eyes are no longer as protruded as they were. She is to receive her second set of reconstructive surgery on February 6."
Loretta Lewis, an official from Being Human, said: "Our priority is to help children like Shaili get treatment so that they come into the mainstream and lead a normal life."
Shaili's case has also attracted the attention of a production house, Barcroft Productions, which is making a documentary for Discovery Channel.
"She would have to undergo another corrective surgery in her late teenage years, as she would still have some degree of deformities," said Rao.
But after the surgery on February 6, Shaili would be "normal" enough to attend school.
