September 4th, 2017
“My sister’s diagnosis was a big shock to all of us but things kept worsening and Dad got paralysed again. We lost my sister due to lack of funds and stop my Dad’s treatment. Help me in my Dad’s recovery here: Ketto.
I remember one day, after coming back from school, I was so excited to see my mother overwhelmed for my sister, Vaibhavi’s birthday. She had cooked all her favorite dishes. But those days have now become memories, very special ones. How I wish I could go back in time and just pause those moments. Life is so unpredictable but they say, the only way out is to keep moving forward.
People say money can never buy happiness but we could have remained happy if we had enough money.
Dad’s had his first paralytic attack 15 years ago.He was on bed rest for almost a year. Mom struggled to manage three little kids without any family income.He got back to work after recovery and we lived happily with whatever we had.
Then is when Vaibhavi got diagnosed with a rare genetic disorder, Porphyria and soon after that Dad got another paralysis attack. She suffered a lot and looking at her made me cry. I always felt so helpless.
The only way we could save her was through really expensive injections. These injections were not available in India but I wanted to do my best to save her.
We knocked at every possible door to help but it is heartbreaking to see how people turn their backs when asked for help. Mom managed to get loans from various places for Vaibhavi and dad’s treatment.
I decided to drop out and started working at the Lalit hotel from where I had done my industrial training. My salary was not enough for the medical bills and basic household expenses. We had to cut down to the bare minimum.
Things kept worsening.Vaibhavi had to be hospitalised every 2 months and the uncleared bills and loans kept mounting. My youngest sister, Sheetal’s education was on stake as we had no money to pay her fees or afford her daily travel for college.
I am trying my best to ensure she completes her education. We seek help from various trust foundations. Our house is also on loan and since Dad is unable to work we are taking help from my cousin, who is one of the few people who have come forward to help us.
Dad’s meagre salary did not help us much.We had no savings. In fact at present there are a number of pending loans that we had taken for Vaibhavi’s treatment. Dad’s physiotherapy stopped due to the financial issues.
We lost Vaibhavi 2 months back and we miss her each and every moment. My world revolved around her and I feel so shattered, I wish I could save her life. Losing Vaibhavi has been a life-changing event for all of us in the family.
I remember how she held my hand whole night when she was in pain and her pain made her so restless. She would lose control over her mind and used to hit me but then there were days when she would hug me so tight. I know deep down she felt bad and helpless but her pain was unimaginable.
My father can’t speak but his eyes speak so much. Once he held my hand and apologised through hand gestures – seeing him joining his hands in front of me, made me feel so emotional. Some wounds are so bad and deep that they break you. But I try to make my family feel better. I avoid crying in front of them and the only time when I can really cry my heart out is after everyone is asleep. I feel I like a failure as I could not save my sister.”
Story By: Poonam Bhagat (via Mission Josh)