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“As winter approaches, her condition worsens. Her limbs stiffen and sometimes she trips and falls abruptly, which causes her horrifying accidents. Sometimes it happens while she's taking a shower, and we only come to know when she calls for us." - Noori, mother.
At barely two years of age, she showed the first signs of this horrifying movement disorder
When Zarin was two years old, her limbs turned at an uncomfortable angle and her muscles stiffened. Her parents Bablu and Noori rushed to the hospital at the first signs of her pain. After running a few tests, the doctor declared the young one to be suffering from dystonia, a disease that has left the family devastated through the years.“When Zarin was diagnosed with such a disorder, my whole world turned upside down, she is our firstborn and I was determined to help ease as much of her pain as possible. Yet, I have felt more helpless as time went on. Our daughter holds back her tears of pain because she doesn't want us to worry, she doesn't deserve this fate.” - Bablu, father.
Suffering from Dystonia her whole life, she needs urgent medical care to survive against her deteriorating condition
The 21-year-old has navigated her whole life while suffering from Dystonia. Dystonia is a movement disorder that causes the muscles to contract involuntarily. This can cause repetitive or twisting movements. She needs medical care that involves physiotherapy, radiology, and Deep Brain Stimulation (DBS) surgery. DBS involves implanting electrodes within areas of the brain through surgery, by which the symptoms of dystonia are managed to a great deal, the cost of which is estimated to be around INR 21 Lakhs.
"We’ve worked day and night, sold all our jewelry and savings to make sure that our eldest is always cared for, and spent about 5 Lakh rupees on her medications, hospitalizations, and physiotherapy. But this amount…. Our circumstances have left us feeling exhausted. Zarin has suffered through this pain in silence, no parent can see their child in such pain and we are suffering through this nightmare for the past 19 years, please help us. ” - Noori, voice trembling
The stiffening of her muscles and twisting of her limbs restrict her body but her mind soars free, she urges for your help to survive and work for her dream
Due to her health and financial strain, Zarin missed out on her education for about two years. She is currently in 12th grade, the eldest among her siblings. They, along with their parents Noori and Bablu, reside in a small room in Lucknow, Uttar Pradesh. Bablu is the sole earner for the family, working as a cook for events, earning an irregular income of about 300 rupees a day the family lives a very hand-to-mouth life. Yet, their resilience in life can be measured by Zarin's power to dream.“I want to be a singer, to touch people's souls with my voice. My family loves to hear me sing. I can't help but smile at how much my younger siblings adore me. I don't wish for much, but one day I want to see my family live a better life, to welcome this world with open arms… that one day my condition won't be holding them back and for this world to show its generosity to people like me.” - Zarin
The 21-year-old dreams of working hard for her dream, to make a better life for her family. She just needs your support in her battle against dystonia, to be seen as someone more than the disorder that restricts and causes her immense pain.
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