News By Meenakshi Chauhan Sharma
Two Indian brothers ostracised as ‘Ghost Boys’ by schoolmates because of their pointed teeth and thinning hair have finally been accepted in their remote village.Ashfaq and Mushtaq Khan, aged 11 and eight respectively, once hide behind walls in the village of Madhya Pradesh to escape the taunts and stares of others.The brave pair were treated as outcasts as residents failed to understand that they suffer from a rare genetic disease, hypohidrotic ectodermal dysplasia (HED), which reduces the ability to sweat, and causes missing teeth and thinned-out hair. There has recently been a remarkable about-turn, however, after the intervention of a local NGO which launched a public awareness campaign to help local people understand their condition.
Heartwarming photographs show the siblings have been accepted as part of the community, as they can be seen playing with neighbouring children while being splashed with water from a bucket, to cool down. Another picture shows the brothers smiling, revealing their pointy teeth and fine, sparse hair. They appear to be living a more normal life, running around happily in a public area while other villagers watch and smile at them.It is a far cry from the children’s earlier years, when they were shunned by villagers because of their appearance.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. Bullying at school, however, has deterred the siblings from wanting to continue with their lessons, particularly as classmates taunted them for looking like “ghosts”. ‘Me and my brother are considered as ghost in school. Our classmates do not play with us, in fact, they call us names. We do not want to continue our study. We feel humiliated in school,’ said Ashfaq. With their father working as a casual farm labourer and earning just £50 a month, it has been very difficult for them to visit a family specialist due to expensive medical treatment.Their mother, Abila, said: ‘We are very poor, we do not even have basic amenities like a fridge, fan and cooler
Children heat up very soon due to their disease, so they pour water over their heads every half an hour.’ Because the family lacks funds to pay for private treatment, and live in the remote village of Madhya Pradesh, where specialised medical facilities do not exist, their doctor, Mukesh, warned that their condition could get worse. Mukesh said: ‘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 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.
Ravi Goyal, director of Shaktishali Mahila Sangathan Samiti, a charity which helps those marginalised in Indian communities, organised an awareness campaign to explain to the residents that the two boys 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.”