Meet a 12-year-old boy
who suffers from a mystery muscle-wasting disease, which has left him too
frail to support his own body parts, India’s Madhya Pradesh state.
Mahendra Ahirwar’s 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 16kg. His parents, Mukesh Ahirwar, 40, and
Sumitra Ahirwar, 35, claim they have consulted nearly 50 doctors all of whom
have not been able to diagnose the boy.
Mr Ahirwar, a father of six,
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. People say bad things about him, and they often laugh at
him. It really hurts us. We cannot tolerate people’s attitudes and
discrimination.
They say I must have committed some
terrible sins and this is why he is suffering, it’s awful. 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. Some doctors said he has polio, some say he has paralysis but no
one has actually found the reason behind his condition.”
Mother Mamta, 35, added: “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. 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.”
Despite his serious disability the
boy enjoys much of the same hobbies as his peers, besides, he is
dreaming of finding love and starting family: “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.”
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