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 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.
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.
More pictures below...
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| Mother, Mamta and Mahendra |
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| Devoted Father, Mukesh and Mahendra |
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| The Ahirwar family |
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