Sujatha Rao

Inspirational Others Children

4.5  

Sujatha Rao

Inspirational Others Children

In all her “Rare Pompe and Glory”

In all her “Rare Pompe and Glory”

5 mins
284


At three years of age, Mani is as rare as they come.

Not only for her parents, but for the world at large.

But right at that moment, she is focusing on the task at hand with narrowed eyes and pursed lips. As the song "Don't you recognize I'm so rare" sung by Selena Gomez is playing softly in the background, her breath comes out in spurts and her hands are shaking. But she is not very perturbed by it, as though is quite used to it.

When she finally manages to hold the red, shiny bead in between her index finger and her thumb, a smile breaks out on her face. She lifts it slowly, trying to bring it closer to her other hand where she is holding the blue plastic thread. But the quivering of the hand is so intense that by the time she brings it closer, the bead slips out of her fingers and falls onto the floor

She yells in exasperation. Beads of tears start flowing down her cheek. Her mother Sulekha comes running out of the kitchen. She tries to scoop Mani into her hands, but Mani pushes her away.

"It's okay, sweetheart. You can try again after a while." Her mother says trying to sound as normal as she can.

Mani gives her Mom a defiant look and starts kicking the beads away. Her mother picks after the strewn beads slowly and puts them back in small boxes as per their different colours. Then she leaves the room. Once inside the kitchen she lets her tears roll down.

In the hall, Mani sits cross legged and attempts to take hold of a green bead. This time it comes into her fingers easily. Enthused by her success, she brings the thread closer. As though willed by her focus, the hand with the thread seems to hold steady for a few seconds, and Mani manages to slip the bead into the thread.

When she stares at the bead firmly held in place with the thread, she feels ecstatic. She cries out "Mama" and Sulekha comes running.

When she sees her daughter smile, she knows instinctively what has happened. Even before her eyes go to the thread, she starts clapping. Both mother and daughter squeal in delight.

                                                                         *****

Mani looks quite small for a three year old. When she had bouts of pneumonia as a eight months old toddler, her parents took her to a doctor. After series of tests, it was concluded that she had "Infantile Pompe Disease".

That's how Mani's parents got introduced to this rare disease. Then they tried to learn everything about it. They learned that it is a multisystemic, hereditary disease, on account of the deficiency of an enzyme that helps break down complex sugars in the body.

Since then, they had been agonizing over the weak muscles and weaker lungs in their daughter manifesting themselves in poor coordination and susceptibility to fall a prey to a lot of infections. At the same time their hearts were warmed by the resilient spirit that shone through that frail body and that became their beacon of hope.

It was Sulekha who spotted her daughter's keen interest in coloured objects, especially beads. Mani would spend hours playing with them, shuffling them, separating them into different colours or simply throwing them around. Out of pure curiosity, Sulekha tried to teach her to thread them into a bracelet and that seems to have caught Mani's fancy. Since then she has made umpteen attempts to get the thread into the beads and that day was the first time she succeeded in doing so.

                                                                          *****

Soon Mani would become unstoppable, as she starts experimenting with different colour patterns on the bracelet. 

As the pile of bracelets grew in size, Mani's mom starts wondering whether she can do something about it. That's when it strikes her. The more she thinks about it, the more she gets excited.

When she runs her idea past her husband Sunil, her excitement latches onto him too. But it takes them about two months to put their plan into action.

They launch it with a big bang event on February 29, 2020, the day that marks the "World Rare Disease Day". Thanks to Sunil's job in the Media, the event is properly launched through a publicity campaign via good media coverage. 

Friends, family, other patient families and general donors throng the event to buy the colourful bracelets, chains, ear studs etc that are primarily made out of Mani's painstaking efforts enhanced by Sulekha's creative embellishments.

By the end of the event, about 65% of the exhibits are sold. A technocrat friend makes a generous offer to set up a website for free, to help them sell their merchandise in future, leaving Mani's parents ecstatic.

As the proceeds of the event make their way into various initiatives in support of improving the lives of other children with Rare Diseases, Mani's parents are touched with the realization that their 4 year old daughter has done what a lot of people fail to do even after living for a century in terms of giving back to the society.

Yes. Mani is as rare as they come, the rarity of her congenital disease notwithstanding. Despite the constant attempt of the debilitating disease to wither away her body, she indeed stands tall in all her "Pompe and Glory"!

Loosely based on Swathi's story on the internet and in celebration of the spirit of all the "Rare" children out there.


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