By Liana Jacob
HEARTWARMING images reveal two brothers being accepted at last after being shunned in their hometown as ‘Ghost Boys’ just for having a rare genetic disease.
Photographs show the two bald brothers with distinctive pointed teeth, Ashfaq Khan (11), and Mushtaq Khan (8), from Madhya Pradesh, India, shying away behind a wall looking withdrawn in their former lives as village pariahs, while other shows one of them playing with neighbouring children while being splashed with water from a bucket. This break though was only possible after a local NGO launched a public awareness campaign to help local people understand their condition.
The brave pair suffer from a hypohidrotic ectodermal dysplasia (HED), a rare genetic condition that reduces the ability to sweat, causes missing teeth and thinned-out hair.
Another picture shows the brothers smiling, revealing their pointy teeth and fine, sparse hair. They are seen running around happily in a public area with neighbours watching and smiling at them.
The genetic disease had manifested and resulted in four pointy teeth in the boys’ upper jaw, hair peppered with grey, flat noses, dark and cracked skin and thin, reedy voices.
The brothers were ostracised throughout their childhood because of their appearance but have now been accepted and appear to be leading a normal life.
With their father working as a casual labour in farms and only earning £50 a month, it has been very difficult for them to visit a family specialist due to expensive medical treatment.
“We are very poor, we do not even have basic amenities like a fridge, fan and cooler etc. Children heat up very soon due to their disease, so they pour water over their heads every half an hour,” their mother, Abila, said.
“Me and my brother are considered as ghost in school. Our classmates do not play with us, in fact, they call us names,” Ashfaq said.
“We do not want to continue our study. We feel humiliated in school.”
Because the family lack the funds to pay for private treatment and live in the remote village of Madhya Pradesh, where specialised medical facilities do not exist, their doctor warned that their condition could get worse.
“I am the general practitioner, I cannot diagnose these children in an appropriate way, I have advised their family to visit a specialist doctor otherwise the problem can worsen with time,” their local doctor, Mukesh, said.
“Their parents are expecting a miracle for their children, they also hope that someone can come forward to help them.”
As a result of their teeth, dental treatment is often necessary in patients with some forms of ectodermal dysplasia, a large heterogenous group of inherited disorders, including HED. Some children may even need dentures as early as three years of age.
Their local non-profit organisation called Shaktishali Mahila Sangathan Samiti’s director, Ravi Goyal organised an awareness campaign to inform the villagers that the two kids were not suffering from a communicable disease.
“We organised two seminars for villagers with the help of school teachers. We explained to them about the disease and also that if the villagers helped the kids, they could live a normal life,” Ravi said.
“The organisation is also helping children to get treated at Lucknow’s Sanjay Gandhi Postgraduate Institute of Medical Sciences which could pave the way for diluting the discrimination, children faced from villagers, who had been labelled the brothers ‘ghost boys’.”
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