7-year-old Shaili Kumari from India was born with Crouzon syndrome, due to which she has an abnormal skull structure and wide-set, bulging eyes. Because of this anomaly, other children often call her a frog or an alien, and Kumari herself suffers greatly because of this and dreams of being normal and going to school. And when he grows up, Kumari wants to become a doctor.
Craniofacial Dysotosis (Craniofacial Dysotosis) is a genetic disorder that leads to abnormal fusion of the bones of the skull and face. In Crouzon syndrome, the bones of the skull and face grow together too early, and the skull is then forced to grow in the direction of the remaining open sutures. This leads to an abnormal shape of the head, face and teeth.
It is not yet clear what causes the gene that causes Cruson syndrome to mutate. Some of the mutated genes can be inherited from the genes of the parents.
“I feel very upset every time I look in the mirror,” the girl says. “I really want to be normal like my brother and sister, but I sing and dance and try not to think about it. And I also want to become a doctor to help people like me. I know that my appearance is abnormal, I would really like to be cured so that I can go to school like all ordinary children and live a normal life.
With Cruson syndrome in developed countries, most children receive very early surgical intervention (up to 18 months), which helps to avoid severe anomalies in the development of the skull, but in the area where the girl's family lives, doctors could not help her. Pintu Kumar, Shiley's father, makes about $ 60 a month working as a security guard, and feels completely helpless because he cannot help his daughter in any way and stop the bullying of her appearance.
Shylie with her 8-year-old sister Saloni
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- Both children and adults are afraid of her and run away, for them she is abnormal. Her eyes became more and more bulging every year and now we cannot let her go for a walk alone, fearing that they will pester her and mock her.
Shiley's family lives in Patna, Bihar state in northern India and her illness did not cause her serious concern until she was 3 years old. Then the girl began to regularly develop epileptic seizures. Doctors have prescribed medications for her epilepsy, but there is nothing they can do to treat her face.
- Some cannot help us, because they have never encountered such an anomaly and do not know what to do with it, while others simply do not want to contact us, knowing that we are poor and will not pull an impressive amount for an operation.
Chandni Devi, Shiley's mother, can only give her daughter warm compresses to relieve her headaches. But she says that now that the girl's eyes are bulging more and more, nothing can relieve her pain. Shylie now often complains of eye pain, headache and deteriorating vision.
Shylie at a doctor's appointment at a local hospital in Patna
- I feel absolutely terrible when I see the suffering of my little daughter, while all children at this age should only play and have fun, and not suffer from pain.
In addition to Shylie, Chandni Devi has an 8-year-old daughter Saloni and a three-month-old son Anmol. Shylie desperately wants to go to school like her older sister, but any outside influence can damage her eyes and she is not allowed to go to school. One day, the father still let Saini go to school, but there other children began to mock her a lot, calling her a frog, a ghost and an alien, and she could not stay there for a long time. Now her father wants to try homeschooling his daughter.
The other day Shylie was a little lucky, information about her appeared on social networks and her story was told in the world media. Shiley is now awaited at one of the best hospitals in India, the Delhi Medical Institute, to examine her.
