Rare muscular disorder forces girl to live as a pariah

Nine-year-old Afsheen from Mithi has her head hanging at a 180-degree angle


News Desk October 28, 2017
Afsheen Qumber PHOTO: DAILY MAIL

A nine-year-old girl whose head hangs at a 180-degree angle is forced to live as a pariah because people are scared of her.

The as-yet unidentified muscle disorder has led to her head at an extreme angle- forcing her to live in seclusion as the public is afraid of her, believing it is due to her sins.

She does not go to school, needs assistance to eat and use the toilet, with her only friends being her six siblings. Her parents, Allah Jurio and Jameelan, do not have the resources to treat their daughter's condition as she requires specialist help and they are financially dependant on their eldest son .

Muscular dystrophy: Genetic disease leaves two siblings wheelchair-bound

Afsheen was declared to have normal development at birth, but after injuring her neck at the age of eight months, according to her mother. Jameelan added, "we ignored her condition initially and due to lack of money we used to take her to a local faith healer but her condition never improved. As she grew older, her problems became complicated. She isn't able to keep her head upright at all and often complains of pain in the neck. She cannot do anything by herself and needs help in everything. She just sits in a corner and occasionally plays with her siblings."

According to her father the entire family suffers due to society's attitudes towards her disease. He says that people avoid looking at her and no school has allowed her to be enrolled, crushing their dreams for her to be educated. He added, "It really hurts us. We cannot tolerate people's attitudes and discrimination."

Living with muscular dystrophy

Dr Dilip Kumar, a local doctor who has examined Afsheen, has said that the while it seems Afsheen's condition is due to a spine anomaly or muscular disorder, it is "one of the rarest of rare cases". He advised her parents to take her to Karachi for a "lifesaving operation" due to the lack of specialists and resources in Mithi.

Her parents have appealed to the Pakistani government for assistance, with her father saying, "If government comes in for help, our daughter can live a normal life. I still have so many hopes and dreams for Afsheen. I want to see her go to school and play with other kids. I want to see her living a normal life and I am hoping that my wish will be fulfilled one day."

This story originally appeared in Mail Online

COMMENTS (2)

Salman | 6 years ago | Reply The Express Tribune, please share contact details of the family here. May someone help them.
Usman S. | 6 years ago | Reply Some government, private agency or NGO needs to step up and help this child. So heartbreaking to see her suffering. ET please continue to highlight her case until help arrives please.
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