4-Year-Old Has Lost Her Childhood To Rare Spine Condition, Needs Help | Milaap
4-Year-Old Has Lost Her Childhood To Rare Spine Condition, Needs Help
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  • Project Global Cure

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    Project Global Cure
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    This fundraiser will benefit

    Rinki

    from Bulandshahr, Uttar Pradesh

80G tax benefits for INR donations

Story

Ravi Kumar and Shashi Devi were overwhelmed with joy when little Rinki came into their lives, 4 years ago. However, their happiness was short-lived. Rinki was born with a large growth at the bottom of her spine, and her parents realised that it was increasing in size with each passing day. As a result, Rinki's health started deteriorating, sending her parents into a state of worry and panic.

Following medical advice, they hoped surgery could fix the problem. However, it was all in vain as the growth only became more prominent. Today, Rinki is 4 years old, but she is yet to even take her first steps. The growth on her back is now the size of an average ball, and she is subjected to teasing and mockery no matter where she goes. She still has a high chance of recovering and living a normal life if she undergoes surgery, but her parents have no means to afford it.

A rare neurological condition has robbed her of a happy childhood 

Rinki suffers from a condition called myelomenigocele, a congenital disability and form of spina bifida that occurs when the baby's spine and spinal cord don't form properly in the womb. Usually evident at birth, it grows rapidly and has drastic effects on the spine. 

As the little girl grew older is when the problems started. She can't stand properly on her feet and is unable to lie peacefully on her back. She can only lay down on one side, and moves around by crawling across the coarse floors. Dragging herself on her hands and knees has left her with painful open wounds. Moreover, there is excessive strain on her spine. She can't even pass stool, and has lost control of baldder movements. Life can get worse for her if the treatment is delayed any further.
 
"It is just growing bigger and bigger! I’m terrified that it will burst anytime and take my daughter’s life. When the doctors explained to us about her rare disease and the need for surgery, I broke down. She has been suffering from the minute she was born. It has been hard on all of us, but she is going through a very difficult time. I only wonder if she will ever be able to experience normalcy in her life." - Shashi Devi, mother.

Rinki is too young and innocent to understand the severity of her condition and questions her parents about why she's different from other children. Despite her illness, she fills their home with her infectious smile. She gives hope to everyone, but she can never escape the harsh remarks and feels terrible when people make fun of her.

Poor parents are trying their best to save their daughter from a cruel fate

Rinki's mother is a housewife and her father is a daily wage labourer. On a good and when there is work available, he manages to earn INR 300 a day. It is hard for him to feed his family with his minimal income. His children even had to drop out of school as he could not pay for their education, and look after his daughter's medical expenses.
 
"I never wanted for my daughter to suffer because of our poverty. But, I had honestly given up hope on her being able to receive treatment. We have to manage household expenses with just 3,500 rupees each month, and some days we even have to go to bed hungry. I am a helpless father who can't do anything for his children. I beg for your help to save my child's life." Ravi Kumar, father.


 

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