Boy 'cursed' with no neck muscles leaving his head permanently lying on his chest or shoulder

India:  A family is appealing for urgent medical help for their son who suffers from a mega-rare condition which has left him with a twisted neck and a 'wasted' body.

Mahendra Ahirwar, 12, from a village in India's Madhya Pradesh state ,suffers from a mystery muscle-wasting disease, which has left him too frail to support his own body parts.

The boy's extensor neck muscles are unable to hold his head in place, meaning it constantly falls onto his right shoulder or his chest.

In addition, his limbs have lost almost all muscle tissue, leaving him weighing just two-and-a-half stone.

Mahendra's parents say he was born a healthy baby, but within three years of his birth he developed the condition, which left them baffled for 24 months.

Eventually, they consulted doctors in the hope of getting him treated.

But now, they fear his crippling disease has become life threatening as doctors are unable to diagnose their son's deteriorating condition.

Mukesh Ahirwar, Mahendra's father, said: "He can move his neck only in three directions. His neck bone is quite strong but cannot hold his head.

"His neck is longer than average size and is growing slowly.

"I don't want him to die but he is losing the battle slowly.

"Being poor doesn't mean you leave your child to die but what can poor parents do."

Mukesh is a labourer with a small piece of land, but he also has to work in other villages so he is able to earn enough money to support his family of six.

Despite his extreme poverty, he left nothing to chance and has taken his son to scores of doctors, who according to him only took money, with no sign of recovery.

He said: "Some doctors said he has polio, some say he has paralysis but no one has actually found the reason behind his condition."

Mukesh said that in 2010, they went to the All India Institute of Medical Sciences (AIIMS) in New Delhi for treatment, where they slept on a pavement for more than a week, making bonfire of plastic rubbish to survive the winter cold.

He said doctors at AIIMS, the premier hospital, conducted series of tests on him but failed to diagnose the condition before they returned to their home as their cash ran out.

"We saved for almost a year for the trip and then it was a nightmare.

"All my savings were finished in days between food and treatment.

"I was almost left without money and I didn’t want to die on the road with my son so I returned to my village."

His father said they had pleaded with the government official and village head to provide a wheelchair for his son but that too didn't bear any results.

Mother Mamta, 35, said that if there is no treatment available for her son's condition, she would want him to die to put an end to years of misery and trauma.

She said: "It pains me to see him like this, when children of his age are enjoying their lives.

"I wonder if death is the only treatment left to end his misery.

"I have to be with him always to feed him, to bathe him and make him wear clothes."

She said people often taunt her for giving birth to a crippled boy and brand their family cursed or stay away from them, fearing they will bring misfortune to their families.

She added: "Its heartbreaking. People say all kinds of things but we have stopped to respond to their ridicule but not all behave like this, there are some who help and support us."

Mahendra said that he dreams of studying in a university and moving to a big Indian city where he can take up a job and settle down with his parents.

He said: "I only want to go to school. I want to play and read books.

"I remain at home and only have to play with my siblings. I know once I get well no-one will tease me."

"Once I get well, I will work and marry," he said.