“I have had this problem since I was a baby. One look at my face and people think I am crazy. They don’t let their children near me. So, I avoid going out during the day because of my hideous face… But the truth is that I want to play with the other kids. I also want to go to school. But I can only do that when I get better.” - Afrina
She has a large tumour on her face caused by a rare genetic condition9-year-old Afrina suffers from a rare genetic condition called plexiform neurofibroma, a tumor that forms on the nerve tissue. She has a large tumor on the right side of her face that has thickened the nerve. As a result, it has affected the structure of the bones, skin and muscle, and also caused her several complications like loss of hearing and vision, severe pain and even learning impairment.
“I can’t see from my right eye, nor can I hear from my right ear. I even have trouble eating food. I really want to study, but I can’t. My Ammi and Abbu have to do everything for me, because I can’t do it by myself. I just wish to have a normal face.” - Afrina
She underwent 2 surgeries, but they couldn’t get rid of the tumorAfrina was only 3 years old, when her parents took notice of a slight swelling on the right side of her face. Thinking that it was because her milk teeth were starting to fall off, they didn’t think much of it - until, the swelling grew abnormally and took up half of her face, causing it to sag downwards.
“We took her to several local doctors, but they couldn't figure out what was wrong. Finally one recommended we take her to a bigger hospital for treatment. There she underwent 2 surgical procedures, and I hoped that was all she would need. However, we were told that her condition was more severe than it seemed, and she will need at least 4 more surgeries in the future…” - Akhtar, father
Only a poor farmer, he can’t bear his daughter’s medical expensesHailing from Kolkata, Akhtar, his wife, Akhrun and their 4 daughters, moved to Bangalore, so Afrina could get the medical help she needed. But 2 surgeries in, Akhtar exhausted all his resources. In order to afford her procedure, he had sold his ancestral land and even borrowed from his relatives.
Akhtar used to be a farmer back home. But since moving to Bangalore a couple of years ago, he has been engaged in daily-wage work to get the family by. He earns only INR 500 per day, which is barely sufficient for their daily expenses, and the pandemic has also made the availability of work pretty scarce.
The family lacks the funds required for Afrina’s facial surgery, and therefore urges the community to help her fulfill her dream of living an ordinary life. As if her financial condition wasn't enough, Afrina also bears the brunt of society. Children her age make fun of her facial deformation, call her names, and even isolate her.
Coming from a non-stable financial background, Afrina awaits a good samaritan to guide her out of her misery. She expresses her inability and seeks financial aid from society, urging people to support her medical journey during these testing times.
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