Girl’s mysterious condition caused her head to bend to a 90° angle

Girl, 11, has her head STUCK at a 90° angle after injuring herself as a child and her family doesn’t have the money for surgery to stop her constant pain

  • Afsheen Kumbar is thought to have a muscular disorder that causes twisted neck
  • First appeared when she was a baby and injured her neck while playing
  • Afsheen struggles to eat, walk and use the toilet, and is unable to go to school 

An 11-year-old girl is desperately waiting for life-changing surgery after a mysterious condition has left her head bent at a 90° angle. 

Afsheen Kumbar is thought to suffer from a muscular disorder that has caused her to develop a severely twisted neck, known medically as torticollis. 

The problem first appeared when she was just eight months old and injured her neck while playing outside. 

Unable to keep her head upright, Afsheen lives in constant pain, which leaves her struggling to eat, use the toilet and even walk.

Afsheen’s condition also stops her from going to to school, with her spending her days at home in Mithi in Sindh, Pakistan, with her mother Jameelan, 52, and eldest brother Mohammad Yaqoob Kumbar, 27.

With doctors baffled as to what is causing Afsheen’s bent neck, the family have no idea what the future holds for her. 

The family are unable to pay for surgery to help Afsheen after her father died of cancer last year, forcing them to live on Jameelan’s salary of £60 ($74) a year while she works as ‘domestic help’. 

Afsheen Kumbar is desperately waiting for life-changing surgery after a mysterious condition has left her head bent at a 90° angle. Although not diagnosed, she is thought to suffer from a muscular disorder that has led to a severely-twisted neck, known medically as torticollis

Afsheen lives in constant pain, which leaves her struggling to eat, use the toilet and even walk. Unable to attend school, she stays at home with her siblings (two of five are pictured)

Speaking of his sister’s condition, Yaqoob said: ‘We are worried for her future.

‘We do not know what will happen to her.

‘We are anxious that if she is left untreated, she could develop some other disease.’

Left untreated, the constant tension caused by torticollis can cause the muscles in the neck to swell and pressure to be put on the nerve roots. 

This has been linked to degenerative spine disease, which occurs when the discs between the vertebrae break down.  

Afsheen, who is one of six, was born healthy. Things then took a dramatic turn for the worse when she was eight months old and fell while playing outside. 

Torticollis can be caused by injuries to the spine or neck muscles. This makes the neck muscles spasm, which can lead to twisting of the head.  

Afsheen’s parents initially thought nothing of her bent neck, until it gradually got worse.

Due to their limited funds, they eventually took her to a local faith healer, but it did nothing to help. 

Afsheen’s story gained worldwide attention two years ago, which led to a ‘prominent female global leader’ offering to sponsor her surgery.

The youngster was taken to Agha Khan University Hospital in Karachi, Sindh, in February last year for a medical examination ahead of a possible operation. 

With doctors baffled as to what is causing Afsheen’s bent neck, the family have no idea what the future holds for her. The condition first appeared when she was just eight months old and fell while playing outside. Her parents thought nothing of it until it got worse


The family’s limited funds mean Afsheen (pictured left and right) has only ever been treated by a faith healer, which did nothing to help. A ‘prominent female global leader’ offered to sponsor surgery with a 50 per cent success rate. But a month later, the family could not contact her

Afsheen stays at home with her 52-year-old mother Jameelan (pictured together), who looks after her. Jameelan also solely supports her six children after their father died of cancer last year. She makes just £60 ($74) a year working as ‘domestic help’

WHAT IS TORTICOLLIS?

Torticollis is the medical term for a twisted neck, which causes the head to tilt.

It can be brought on suddenly by trauma to the spine or neck muscles. 

Torticollis can also run in families, which is thought to be cased by involuntary contractions of the neck muscles.

This form of the condition usually develops slowly and appears when a patient is 30-to-50. 

Other causes can include an infection of the head or neck, which inflames the lymph nodes in the neck.

The muscles over these lymph nodes may contract, causing the head to tilt.

In rare cases, torticollis can be brought on by tumours, scar tissue or arthritis of the spine.

In the short term, torticollis can be uncomfortable and makes moving the neck difficult.  

Other symptoms include oculogyric crisis – when the eyes involuntarily move ‘upwards’ – and protrusion of the tongue.

If severe cases go untreated, the constant tension can cause the muscles in the neck to swell and pressure to be put on the nerve roots. 

This has been linked to degenerative spine disease, which occurs when the discs between the vertebrae break down. 

Treatments aim to relax the contracted neck muscles, which may include medication or stretching exercises.

In severe cases, surgery may be required to sever the upper neck nerves or muscles to prevent contraction.

This is usually successful, however, the neck can go back to its twisted position after several months.

In very rare circumstances, deep brain stimulation may be necessary.

This involves inserting a wire into the area of the brain that controls movement.

Electrical signals are then sent out to disrupt the process that causes torticollis.

‘They told us there is 50 per cent chance for the successful surgery and asked us to go home and think over it,’ Yaqoob said.

Due to a marriage in the family, the operation was delayed for around a month. 

However, Yaqoob claims that after the nuptials, the initial sponsor did not answer the family’s calls.   

‘After a month, the leader who promised to sponsor for the surgery never responded to my repeated calls or connected with us,’ he said.

‘We did not have [the] money to take Afsheen to hospital on our own.

‘In the last year, she has been at home. She has not seen a doctor.’

Yakoob used to work at a mobile-phone shop but quit to help his sister travel to her medical appointments.   

‘I had to quit my job because I had to look after Afsheen,’ he said. 

‘I was taking her to hospital but ever since, I have been jobless.

‘My mother earns £60 from working at other’s homes. 

‘This is how we are making our ends meet.

‘We have no money to pay for her hospital fees.

‘We cannot even take her to hospital because she cannot commute by public transport.

‘And a private taxi costs £70 ($86) [for] each journey.’

Yakoob is calling on the public and Pakistani government to help his sister.

‘We took her to a local doctor in our city but he said only specialists can treat her,’ he said. 

‘He advised us to take her to a foreign country.

‘We have no money to take her to a different city.

‘How will we take her to a foreign country?

‘I am pleading [with] the government and locals here to please help my sister. 

‘She needs surgery to live a normal life.’

Afsheen’s eldest brother Yaqoob (pictured right with two other of their siblings) quit his job at a mobile-phone shop so he could accompany his sister to her medical appointments

The family are calling on the public and Pakistani  government to help Afsheen. They have been told to take her to specialists abroad, but they struggle to make ends meet as it is 

Despite all she endures, Afsheen (pictured with two of her siblings) manages to raise a smile

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