This Boy Suffered An Extremely Rare Condition That Makes His Head Hang From His Body
It’s a behavior many wouldn’t accept, but we can’t blame them just like how Mukesh and Sumitra Ahirwar from Madhya Pradesh in central India felt about the condition of their 12-year-old son Mahendra Ahirwar.
Mahendra Ahirwar suffers from an extremely rare condition that makes his head hang from his body at 180-degree angle.
He has a weak backbone which made his neck bend and his head hangs from his body. Mahendra can’t stand and walk, he can crawl but he needs to be assisted when eating and going to the bathroom. Most of the time he’s just sitting at the corner.
His parents Makesh, 40, and Sumitra Ahirwar, 35, both working as a laborer said that they have already consulted 50 doctors across India but they failed to give answers to Mahendra’s condition.
Sumitra said, “I cannot see him suffer anymore. Watching his life is devastating. He cannot do anything by himself. He just sits in a corner of the room all day. It’s no life. I have to carry him like a baby everywhere but he is 12 years old, how will I carry him when he grows even older?”
If doctors cannot treat my son it is better that God takes him
Sumitra’s other children are perfectly healthy, a 16 and 10-year-old sons and a 14-year-old daughter.
Their children were all born normally so they never thought to consult a doctor or have an ultrasound done with Mahendra, who was born at home just like his siblings.
Mahendra’s condition started to get notice when he’s about six months old, the couple had observed their son’s head was starting to hang. Mukesh explained, “At first we thought he was just a little weak and he’d be fine in time, but by his third birthday he wasn’t able to keep his head upright at all.”
Unbelievably, their community blamed Mukesh for his son’s condition because of his past sins. Shockingly the devastated father believed that he is to blame for his son’s disability.
Mukesh who is a construction worker earns Rs200 daily. He already borrowed money from his friends and relatives in quest to find cure for his son’s illness. He took his son to all the hospitals that he can afford, even at India’s premier hospital. But after spending two weeks at All India Institute of Medical Sciences in New Delhi, doctors failed to tell them if Mahendra is curable.
Hopeless and heartbroken, they returned home and decided to raise their son with a comfortable life as much as they can. Since then they stopped taking Mahendra to any doctors.
What’s even worse is, people say bad things about the poor child, laughing at him often.
Mukesh also added, “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.”
Dr Shashidhar Tatavarthy, an ear, nose and throat consultant thinks Mahendra has a muscular disorder.
“This is one of the rarest of rare cases. His condition could be due to a spine anomaly or muscular disorder, but it can only be concluded after a thorough investigation.” the doctor from Delhi’s Artemis Hospital added.
Mahendra doesn’t go to school so his only friends are his siblings and his cousins.
But his father is still hoping for a miracle stating, ‘If doctors can treat babies born with severe disabilities like two heads and give them lifesaving operations then why not my son?”
‘I still have so many hopes and dreams for him. I want to see him go to school and play with other kids. I want to see him living a normal life and I am hoping that my wish will be fulfilled one day,” he added
It’s truly heartbreaking to see your child suffering from a rare disease and what’s worse is…there’s nothing you can do to help, only give love and acceptance until the day their body succumb.
It’s a behavior many wouldn’t accept, but we can’t blame them just like how Mukesh and Sumitra Ahirwar from Madhya Pradesh in central India felt about the condition of their 12-year-old son Mahendra Ahirwar.
Mahendra Ahirwar suffers from an extremely rare condition that makes his head hang from his body at 180-degree angle.
He has a weak backbone which made his neck bend and his head hangs from his body. Mahendra can’t stand and walk, he can crawl but he needs to be assisted when eating and going to the bathroom. Most of the time he’s just sitting at the corner.
His parents Makesh, 40, and Sumitra Ahirwar, 35, both working as a laborer said that they have already consulted 50 doctors across India but they failed to give answers to Mahendra’s condition.
Sumitra said, “I cannot see him suffer anymore. Watching his life is devastating. He cannot do anything by himself. He just sits in a corner of the room all day. It’s no life. I have to carry him like a baby everywhere but he is 12 years old, how will I carry him when he grows even older?”
If doctors cannot treat my son it is better that God takes him
Sumitra’s other children are perfectly healthy, a 16 and 10-year-old sons and a 14-year-old daughter.
Their children were all born normally so they never thought to consult a doctor or have an ultrasound done with Mahendra, who was born at home just like his siblings.
Mahendra’s condition started to get notice when he’s about six months old, the couple had observed their son’s head was starting to hang. Mukesh explained, “At first we thought he was just a little weak and he’d be fine in time, but by his third birthday he wasn’t able to keep his head upright at all.”
Unbelievably, their community blamed Mukesh for his son’s condition because of his past sins. Shockingly the devastated father believed that he is to blame for his son’s disability.
Mukesh who is a construction worker earns Rs200 daily. He already borrowed money from his friends and relatives in quest to find cure for his son’s illness. He took his son to all the hospitals that he can afford, even at India’s premier hospital. But after spending two weeks at All India Institute of Medical Sciences in New Delhi, doctors failed to tell them if Mahendra is curable.
Hopeless and heartbroken, they returned home and decided to raise their son with a comfortable life as much as they can. Since then they stopped taking Mahendra to any doctors.
What’s even worse is, people say bad things about the poor child, laughing at him often.
Mukesh also added, “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.”
Dr Shashidhar Tatavarthy, an ear, nose and throat consultant thinks Mahendra has a muscular disorder.
“This is one of the rarest of rare cases. His condition could be due to a spine anomaly or muscular disorder, but it can only be concluded after a thorough investigation.” the doctor from Delhi’s Artemis Hospital added.
Mahendra doesn’t go to school so his only friends are his siblings and his cousins.
But his father is still hoping for a miracle stating, ‘If doctors can treat babies born with severe disabilities like two heads and give them lifesaving operations then why not my son?”
‘I still have so many hopes and dreams for him. I want to see him go to school and play with other kids. I want to see him living a normal life and I am hoping that my wish will be fulfilled one day,” he added
It’s truly heartbreaking to see your child suffering from a rare disease and what’s worse is…there’s nothing you can do to help, only give love and acceptance until the day their body succumb.
