Supriya, an active and energetic girl lives in the outskirts of Chennai with her mother and her brother. A month before her 6th birthday in 2015, she started to experience numbness in her hands and legs and slurring of speech. She also lost dexterity in her fingers and couldn't hold even a glass. The numbness recurred on an off and over the years, she lost her ability to speak clearly and only her mother understands her words now. After her father abandoned the family, Supriya only has her mother to lean on.
She goes to school sometimes, but very soon she would return to home owing to piercing headache and frequently loss of consciousness. This debilitating condition can turn fatal at any moment without a brain surgery. Supriya now spends every minute in excruciating pain and trauma.
A rare disease has affected the blood flow to her brain and only an urgent surgery can cure it
It was the time when Vanita's husband left her and her children. In the midst of betrayal and confusion, life threw another curveball at them. Her daughter Supriya was diagnosed with Moyamoya syndrome which means 'puff of smoke' in Japanese. It describes the look of the tangled mass of tiny collateral vessels that develops at the base of the brain when normal blood vessels narrow and become blocked. If enough collateral vessels don’t develop, repeated strokes can occur. Surgery is the only way to provide more blood flow to the brain. She was taking medicines all these years but it not enough anymore. She will lose all movement and her life without a surgery.
"I thought the numbness was temporary but even before I could take her to the hospital, she lost movement completely. She was in ICU for 15 days. Since then she is taking a lot of medicines to ease her pain. Suddenly, she gets painful cramps in her hands and legs, unable to do anything. Last month, she started getting violet seizures as well. She has no energy for anything now and cries uncontrollably on some days. I have to help her even for basic activities like using using the toilet and eating food because most of the times her hands and legs are numb." - Vanita.
Little Supriya has only experienced pain and isolation in her life
Supriya has always lived in an isolated world. She hardly has any good memories of her childhood. Despite her condition, her mother sent her to a government school with the hope that she'll pick up. Her teachers, classmates and even her younger brother Yokesh (8) have difficulty in understanding her words. She sits in the corner of her class the whole day and comes back home. Even when her mother sends her to buy milk packets from the shop, she would write that in a paper and give it to her. She has no friends, waits every day for her mother to come back from her work. Other days are spent in the hospital
" I do not have money to put her in school for special children. Every year, she is promoted to the next class, but she hardly learns anything. She tries her best to write neatly and memorize tables but her body does not cooperate with her. As a mother, I can feel her pain. She begs me to help her, sometimes shouts and breaks down." - Vanita.
Her mother struggles all alone to support her childrenVanita works in a small mobile recharge shop and earns Rs 7000 per month. She manages to take care of her children with this meagre income. She spends nearly Rs 3000 only for medicines every month.
She is not able to go for her work regularly because of Supriya's health condition. She has no one to support her both financially and emotionally.
"My daughter will continue to suffer without surgery and it costs 4 lakh. How can I arrange such a huge amount? She has seen only suffering and pain in her life. I long to see her live a normal life. She trusts me, she is holding on to me, all we have is each other's shoulders. I cannot give up on her." - Vanita.
How you can help
9-year-old Supriya suffers from a rare disease that affects the blood flow in her brain. She is in terrible pain because of piercing headaches and cramps in her hands and legs. Her speech is also affected by this. Without a surgery, she can get a stroke and lose her life too. Her mother struggles all alone to save her daughter from this cruel disease. Your support can help her live a normal life.