A LITTLE girl cruelly nicknamed “frog” and “alien” for her bulging eyes and oddly shaped forehead has finally been able to make friends thanks to life-changing surgery.
Shaili Kumari, from Bihar, in eastern India, suffers with a rare genetic disorder called Crouzon syndrome, which caused her skull to form abnormally.
The eight-year-old had poor eyesight and frequent headaches because of her condition and was unable to go to school.
Her father, Pintu Kumari, earns just £55 a week as a security guard and could not afford to pay for treatment to help Shaili live a normal life.
But after her story was given local media coverage last year donations from local charities and kind strangers began pouring in and Shaili’s family were finally about to afford to send her to hospital.
Shaili said: “I’m so happy. I never imagined strangers would help me get treatment.
“It’s amazing how strangers have come forward to help me. I now feel normal, just like others. It’s been a miracle.”
Utpal Dutt, who founded a charity called TRY in India, was able to raise £16,000 for Shaili’s surgery.
Shaili was taken to Sita Bhateja Hospital in Bengaluru, southern India, where doctors told her they could correct her eyes.
Dr Krishna Shama Rao, Shaili’s surgeon, said: “Shaili’s skull was not able to grow normally and the brain was not able to expand in the normal way.
“The condition compressed the brain from inside and the skull shape was abnormal giving an odd look.
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“Due to this premature fusion, the skull is smaller, especially where the eye sockets are concerned, which causes bulging of the eyes.
“This is dangerous as it can lead to blindness. There was also a risk to her life because of the increase in pressure on the brain.”
Shaili underwent two operations, first in February this year, lasting six hours, and the second in May, which lasted nearly five hours.
Dr Rao said: “We first reshaped the skull bone and released the pressure on the brain by connecting a pipe.
“We then brought the middle part of her face forward.
“Her eyes are now more or less inside their sockets in a normal position. Her face now looks normal.”
Shaili is now recovering at home and her skull has been reshaped.
Shaili’s mother, Chandni Devi, 27, said: “She used to cry so much due to the pain and swelling but she is so happy now.
What is Crouzon syndrome?
Crouzon syndrome is a rare genetic disorder that causes the premature fusion of some skull bones.
The early fusion prevents the skull from growing normally and affects the shape of the head and face.
Features of Crouzon syndrome include wide-set, bulging eyes and vision problems, eyes that do not point in the same direction, a beaked nose and an underdeveloped jaw.
Many people with the syndrome also have dental problems and hearing loss.
Cause:
The condition is caused by a mutation to a specific gene, called the Fibroblast Growth Factor Receptor 2 (FGFR2) gene and FRGR3.
These affect how certain cells in the body, including bone cells, grow, divide and die.
The mutation can be passed from parent to child but most of the time it develops out of the blue.
Treatment:
The most common type of treatment is surgery to reshape the skull and face.
Other treatments after surgery include speech therapy, dental surgery and sessions with a psychologist to help the patient live a normal life.
Depending on the age of the patient when surgery is performed, further surgery may need to be undertaken as the bones continue to grow and reshape.
“She tells me every day that she is so thankful to the people who helped her.
“Her life has changed and I cannot thank people enough. The way they’ve helped my daughter is an example of humanity.”
The next step for Shaili will be to go to school.
Shaili hopes she will one day become a doctor.
She said: “I have never been to school but now my dreams are coming true.
“I hope no one will call me names or make fun of me now.”
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