“My family, neighbours and friends once used to praise and compliment me because they thought I was beautiful. But today, those same people refuse to look at me and run away when they see me. It has completely destroyed my confidence. When I look at old pictures of myself, I feel so dejected. This tumour on my face has taken over my so life completely that I can’t do anything because of it. I can’t even look at myself in the mirror. What is the point of living if this is what my life has come to?” - Shirya
She was forced to drop out of college, after a tumour shattered her dreamsA college-going Shirya had been working towards her life-long dream of becoming a teacher. But it all came crashing down when a growing lump near her eye turned into a full-fledged tumour, forcing her to drop out of college. Shirya was diagnosed with encephalocele, a rare condition where the neural tube does not close and causes a sac-like bulge on different parts of the body, especially the back of the head and on the face.
The growing mass has impacted her eye, nose, cheek and ear. Her vision is faintly impaired and her eye gets teary due to the swelling. Sometimes, she sees things double, and even has trouble hearing. The swelling has affected her nose making it suffocating for her, while causing an obstruction for her mouth and making it difficult for her to talk, eat or drink. She cannot even feel the food and water she consumes.
"I can’t do anything normally. When I drink warm water I can’t sense it, but when I consume cold water I feel pain in my throat. I easily tend to catch a cold as well. The difficulty with eating and drinking has even affected my menstrual cycle. It has stopped, which has ultimately affected my body.” - Shirya
She yearns to return to her old life, study hard and become a teacherShirya fears that her dream to become a teacher will remain unfulfilled. Even after she became victim to this deformity, she tried to not let it get to her and resumed her life as usual. But she was forced to quit when the children she used to teach could no longer understood her because her voice had changed drastically. She went from being a respected teacher to just ‘Shirya’, and the subject of her own students’ mockery.
“I was given the opportunity to work at a summer camp, and I was extremely excited about it. For a teacher, voice is essential for teaching, and I’d always been proud of myself for having a strong command over language. But that day, the children looked at me blankly as I taught them. They couldn’t understand me. The organisers were respectful enough to not fire me, but they later pulled me aside and told me the problem. I was embarrassed and upset, and quit the job immediately.” - Shirya
Her treatment costs lakhs of rupees, which her family can’t affordThough she hails from a poor economic background, Shirya’s parents had always been supportive of her and never stopped her from dreaming big. She wished to give back to her parents tenfold for all they had done by becoming successful and helping them financially. But this tumour put a plug on her dreams.
Shirya confesses to having thought of ending her life, but brushed it away because of her parents who love her so much. Both her parents are tailors and earn a minimum wage, and arranging for INR 30 lakhs for their daughter’s treatment is not within their means. Shirya’s brother gave up his studies after learning about his sister’s condition, determined to earn enough money to get her treated. But so far, their efforts have all been for naught.
“When I was in college and people used to ask me to get married, I used to refuse because I wanted to study. Now when I see my younger sisters with their children, I wish I had this privilege. Every girl dreams of getting married and settling down in life, but no one wants to marry me because of my condition. I was so happy to find out that I could be treated and this nightmare could end soon, but the cost of the surgeries… it’s not something humble people like us can ever afford. The small spark of hope I hold onto is slowly waning now.” - Shirya
Shirya needs your help to undergo multiple surgical procedures to rid her of the tumour and get back on her feet. Click here to donate.