A BOY born with a rare condition is desperate for life-saving surgery to remove his huge, trunk-like nose.The nine-year-old suffers frontonasal encephalocele, where brain tissue grows out through a defect in the skull.
The weight of the growth meant the boy, nicknamed Ganesh, was unable to eat or speak when he was found by police.
He was roaming aimlessly on a deserted road in a remote village in northeast India.
But, he couldn’t tell police who he was or where he came from due to a speech impairment caused by the growth.
They named him Ganesh, believing he could be the reincarnation of the Hindu God Ganesh.
Police have since found out he is an orphan, and he was taken to be cared for by a child welfare committee in Assam.
A local NGO then offered to care for Ganesh.
Jiten Gogoi, president of the NGO, said: “He is the most special child in our NGO.
“I have never seen a child like him before.
“He could not talk. Because of the weight of his nose, he could not eat food by himself either.
“He was in an extremely painful situation.
“Our volunteers fed him and looked after him.”
With government’s help, the boy was admitted to a state-run hospital and was then transferred to Bangalore for advanced treatment.
For the last week, Ganesh has been cared for by a team of six doctors at Narayana Multi-speciality Hospital.
Dr Shibu Pillai, senior consultant neurosurgeon, who is looking into Ganesh’s case called his condition a rare congenital defect – meaning it’s present from birth.
“The boy is suffering from frontonasal encephalocele, a condition in which a part of skull is not developed.
“In his case, because of the defect, a part of brain has bulged out of skull and created a large lump on his forehead.”
Frontonasal encephalocele is a defect caused when brain tissue grow through a defect in the skull.
It leaves patients with a swelling over the bridge of the nose or eye socket, with varying degrees of abnormality.
The doctor said while the case is not uncommon, what makes Ganesh’s condition so rare is that he was left untreated for a long time.
The doctors are now hoping to perform reconstructive surgery to reduce the size of Ganesh’s growth.
Dr Pillai said: “Our first priority is to operate on him to reduce the swelling and reconstruct his nose.
“While the surgery would be complex and might last as long as six hours, we are confident that it would be successful.”
But doctors believe Ganesh will need a couple of surgeries before he can lead a normal life.