S haili Kumari, 7, from Patna Bihar in Eastern India, is suffering from a bizarre genetic disorder called Crouzon syndrome. In this rare disease, the bones in the skull fuse prematurely causing bulging eyes and abnormal development of the face.Shaili was left with no other option but to leave her schooling because of the bullying faced by her in school. She dreams to look like her sister and join school again.Read more to know the heartbreaking story of this little girl.
This 7-year-old girl was fed up with the unpleasant taunts such as frog, alien, ghost etc. by other kids in her school. Her parents felt helpless due to the bullying faced by their daughter daily. They took the decision to discontinue the studies of Shaili.
Her eyes are unable to look in the same direction due to shallow eye pockets.
This little girl faces the harsh taunts by people in her village every day. She stated, 'I feel bad when I see myself in the mirror and wonder if I'll ever be like my brother and sister but I keep myself busy singing and dancing so that I do not think about it. I really want to study and become a doctor so that I can help people like me. I know I'm not normal. I want to be treated so that I can start going to school and live my life. I'm not afraid of doctors. Actually, I love seeing them because they give me hope of getting better.'
Unfortunately, none of the doctors succeeded in providing proper medical care to Shaili near her village when she was diagnosed with this disorder.
Her father Pintu Kumar, 33, exclaimed, 'Both children and adults get scared and run away when they see my daughter. It is hurtful for us as they believe she is not normal. Her eyes started getting huge gradually over the years and now we cannot allow her to go out alone fearing she will be mistreated. Some doctors could not diagnose; some did not know the treatment since they'd never seen such a case, and many did not entertain us knowing our poor financial status. They only treated her for what we could afford which were anti-epileptic medicines.'
Shaili's mom Chandni Devi, 26, is trying her best to ease her daughter's condition. She explained with grief, 'When her eyes began to grow noticeably large I used to apply heat packs for the pain but that would only last a few seconds. There is nothing that eases her pain now. She complains of pain in her eyes, headaches and poor eyesight. I feel terrible that she's in this condition and when children make fun of her my heart cries. It's tragic as a mother that she asks me if she'll ever be like other children and I have no answer to give her.'
Dr Ashish Sinha stated, 'In spite of her genetic disorder, she does not have any chest related issues, which is common in congenital issues. This is a rare case and treatment will be done after genetic testing. We have referred her to the All India Institute of Medical Sciences Hospital, in Delhi, where the family will get the help they deserve. But only a specialist doctor will be able to help her as the problem is very complex relating to both her skull and eyes.' Shaili dreams to become a doctor so that she can help other kids suffering from similar disorders. Let's hope that Shaili succeeds in fulfilling all her dreams.
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