7yr-old Indian girl fights crouzon

image

A seven-year-old Indian girl faces cruel taunts of ‘frog’ and ‘alien’ from other children because she has a rare condition which causes her eyes to bulge.

Shaili Kumari suffers from a rare genetic disorder called Crouzon syndrome – which occurs when bones in the skull fuse prematurely.

Abnormal growth of these bones leads to wide-set, bulging eyes and vision problems caused by shallow eye sockets, and eyes do not point in the same direction.

The bullying means Shaili does not go to school. Despite this, she has dreams of becoming a doctor one day so she can help other children with her condition.

‘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,’ she said.

‘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.’

Most children have surgery before they are 18 months old to separate the skull before it fuses together but Shaili has been taken to doctors near her home who have been unable to help.

Her father Pintu Kumar, 33, who earns £40 a month as a security guard, says he feels ‘completely helpless’ to stop the mean taunts.

‘Both children and adults get scared and run away when they see my daughter,’ he said.

‘It is hurtful for us as they believe she is not normal.

image

I know I’m not normal. I want to be treated so I can start going to school and live my life
Shaili Kumari, seven

‘Her eyes started getting huge gradually over the years and now we cannot allow her to go out alone fearing she will be mistreated.’

Shaili, from Patna, in Bihar, eastern India, was born with eyes that appeared larger than normal but her problems did not escalate until her third birthday.

She began to suffer epileptic seizures and even though doctors gave her medicines to treat the seizures, they said there was nothing they could do for her facial condition.

‘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 mother Chandni Devi, 26, does not leave her side and says she tries ease her daughter’s symptoms.

‘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,’ she said.

‘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.’

Shaili is one of three children but her eight-year-old sister Saloni, and three-month old brother, Anmol.

She has always been desperate to go to school but the slightest knock could damage her eyes further.

And even though her father sent her to school when she was young the bullying and name calling – such as ‘alien’, ‘frog’ and ‘ghost’ – was so severe she couldn’t continue.

‘She has a lot of interest in studying but she’s not enrolled in any school at the moment.

‘Whenever Saloni gets ready for school, Shaili gets ready too and begs to go with her, but we have to make her understand her condition.

‘Even a small injury widens the size of her eyes.

‘But she’s so desperate to learn we’ve now started home schooling for her. She keeps saying she wants to be a doctor so no one else will suffer like she has.’

Shaili sees her big sister Saloni as her best friend.

Pintu added: ‘Wherever Saloni is Shaili is not far behind. Saloni is very protective of her and when we had to shave Shaili’s head for some tests one time, Saloni also shaved off her hair.

‘It helped Shaili feel better about herself.’

Now, Shaili is waiting to see doctors at one of India’s top hospitals the All India Institute of Medical Sciences Hospital in Delhi.

Utpal Dutt, 34, founder of a charity called Try, said: ‘Somebody posted information about Shaili on a social network site and we approached the family to try and help.

Both children and adults get scared and run away when they see my daughter

‘I was so touched to see Shaili’s happy personality.

‘She is full of life and very cheerful. No child should be left like this so we took her to a local hospital for a consultation free of charge.’

Dr Ashish Sinha, a physician at Ruban Hospital, in Patna, said: ‘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.’

Leave a Reply

Your email address will not be published. Required fields are marked *