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Must read: An inspirational story of how this courageous girl hasn't let her deadly disease rule her life

10 Oct, 2016
Must read: An inspirational story of how this courageous girl hasn't let her deadly disease rule her lifeMust read: An inspirational story of how this courageous girl hasn't let her deadly disease rule her life

This courageous girl from Mumbai is the perfect example of how no adversity, big or small, can beat a pure heart and a giving soul

When all else fails, only hope and courage prevails. And this is exactly what this young Mumbai girl has proved.

Sharing the courageous story of her daughter with Humans of Bombay, this mum revealed some incredible instances that are sure to leave you teary-eyed as well as feeling inspired.

"We found out she has a rare disease called PKAN-2 when she was 3 years old. There is no cure for it, and as time progresses it only gets worse," she begins as she explains that PKAN-2 or Pantothenate Kinase-Associated Neurodegeneration is a diseases that leads to damage or degeneration of nerve cells in the brain and accumulation of excessive iron in the body.

As she continues to share her daughter's story, the doting mum says that even with a problem that has no cure and may very soon possibly take her daughter away, the only thing that is constant is her little girl's smile and her positive spirit.

"She tends to fall a lot, her speech is very limited and she can't be formally schooled -- but the one thing that has been constant in her life is her smile," she shares.

A special child in India

Sharing that in India a child with special needs is treated and looked at differently and sometimes even labelled a taboo, it can be quite difficult in such circumstances to boost their confidence.

"You know special children are considered a taboo in our society -- they're swept below the carpet and hidden but what is their fault? This condition is so rare and random, that it could happen to anyone and all we can do is add quality to her time here," says the mum (whose name has been kept hidden).

An example for all

Even with all these difficulties, the young parents have managed to build a strong bond through patient communication. But the fact that this young girl takes her difficulties in her stride, makes the process that much easier.

"Funny part is, we build up our condition in her head and feel she's special -- but she is blissfully unaware and happy all the time. She loves to color, she paints, she tap dances and loves to be out in the open. Believe me there are so many things we learn from her every single day," says the loving mum.

Continue reading to see how this young girl copes with her problems and why she never gets agitated.   

Only gratitude drives this young soul

Sharing that such a condition can mean disappointed with oneself and an inability to do regular things, the mum shares that these things do not affect her daughter.

"She has so much to be frustrated about -- she often loses balance and falls down pretty badly, but apart from the 2 minutes after, where she cries, she has no form of self pity -- she's back and walking again. She finds it difficult to communicate - like just the other day she wanted to go to the park but it took us really long to understand her, but she was still so patient and full of appreciation when we took her there," she shares.

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Truly an inspiration for all

As her mum shares that parents often overthink about medical conditions that affect their children and let time pass them by. But we must consider the fact that for the child everything is a new experience and every day is memorable.

That's perhaps why, as parents, we must spend as much time with our young one as possible.

"We know that it's rare for kids with this condition to even make it past their graduation, but like I said that's us adults overthinking. For her, her life is perfect, this world is perfect and with each passing day she falls in love with something new -- whether it's a new color, a new song or a new person. And that's something we could all learn to do from her...live for today, as happily and as enthusiastically as we possibly can," she says. 

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Hats off to this young soul!

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(Image courtesy: Facebook, Pixabay)

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Written by

Deepshikha Punj

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