Big Stories of Little Hearts: Jayakanth, Kshitija, Aarohi and Manthan
November 16, 2021 | Contributed by Monisa Nadeem
The Covid-19 pandemic has affected families in every part of the world, leaving no one untouched. Whether it’s parents, or partners, or children, or relatives and friends, the impact has been felt at varying degrees.
Similarly, when a child is diagnosed with a congenital heart defect, it unsettles the entire family. And searching for avenues of heart disorder treatment becomes tougher for families from humble backgrounds. At Genesis Foundation, through heart treatment for poor children we ensure that we give life a chance for every child, irrespective of their financial background. Helping us in this journey are CSR partners like Himalaya Wellness Company, to see India free from heart defect related deaths. Four such children supported by them, are leading near-normal lives because they received timely heart disorder treatment. The unique stories of resilience of these families will encourage you to just keep moving ahead in life.
How often does it happen that you speak with someone over a phone call and the conversation leaves you in tears? My interaction with Kshitija’s family did that and more.
Kshitija smiling for
Talking to her mother she happily tells me that her daughter is doing good health-wise because a child who couldn’t run earlier, now loves to play pakda-pakdi (catch-catch or tag in English) with all the neighbourhood kids. She says, ‘She was quiet before the surgery because she used to get tired all the time, but now her whole personality has changed. She enjoys her online phone classes and loves to watch Doraemon and Shin-Chan cartoon.’
Kshitija’s family, with her
elder sister and mother
Then speaking with her elder sister who is in Grade 10, Preshita tells me both the sisters share a very close bond. As we continue talking, she also tells me about her mother’s separation from her father, and how her mother has been receiving treatment for esophageal cancer.
In that moment I felt taken aback, because here I was talking to her mother a few minutes earlier, and she didn’t say a work about her own struggles and kept re-iterating how grateful she felt that her daughter got treated at a private hospital and is living a normal life. Prodding Khitija’s mother to talk more, she tells me, ‘Everyone has struggles that set them back, but life is such that moving forward is the only option at times. I live with my brother because I cannot work due to my health, I’m ensuring that both my daughters’ study well so they don’t have to suffer in any way. Thea joy of seeing <insert elder daughter name> study for Grade 10 exams and Kshitija play around like a normal child, mutes all my pain.’
I thank her for talking to me, and salute her silently for showing such strength even in the face of such an adversity.
Eldest brother Parshuram, youngest
sister Mano, middle child Manthan
and younger brother Gautham
Before I can even begin talking to Manthan’s mother, the first things she says is ‘I have three sons and one daughter, eldest is seven, Manthan is four and a younger one who is two years old, and their sister who is almost one year old. So please don’t mind all the background noise and talk as loudly as possible.’
Naturally it made me laugh as I get to virtually witness all the commotion on the other end of the line. She goes on to tell me that at home everyone lovingly calls him ‘Lucky’ because he has fought his heart defect. From being a child who would be sick all the time, with blue lips and finger nails, unable to stand, he has come a long way. She says, ‘Now he doesn’t keep quiet only, talks all the time, jumping from here and there. Fights with me for the mobile all the time because he wants to watch Superman and Spiderman cartoons.’
Little Manthan posing with
his favourite toy
No less than a little hero himself, Manthan’s favourite food is Chinese cuisine and pizza. His mother makes it all at home because his consulting doctor has advised home-cooked meals for him. However, one thing she can’t make at home is the Cadbury milk chocolate, which she says he is crazy about. She tells me that during the yearly visits for his routine heart check-up, his doctor gives him an entire box of chocolates, hence he loves the hospital!
I ask him about his cartoons, and he tells me that I am Chota Bheem (an Indian cartoon) and he would like to invite me home so we can play together. Overjoyed hearing him invite me home, I promise to see him whenever I’m in Mumbai next.
Aarohi Abhijit Malage
Aarohi sharing her drawing
skills on camera
Now in Grade 2, little Aarohi’s cute expression should not be mistaken for a docile personality, in her mother’s words (not mine). ‘She and her younger sister Ishita fight a lot because they disagree on everything. If one says mango, the other has to say tamarind’, she tells me.
With online classes going on their mother spends half the day trying to resolve arguments, as the elder one is allowed to access the phone longer than the younger one. But her mother is happy that now at least both girls go to cycle together, because before the surgery Aarohi was always down with cough and cold, and excessive breathlessness.
Aarohi’s family, with her younger
sister and parents
She says happily, ‘If I don’t be strict with these girls, they won’t study because they can play the whole day. In those moments, these two become a team and I’m their enemy’.
Trying to speak with Aarohi, her fluency in the Marathi language (and my lack of) cuts-short our conversation, as she tries to explain her interest and passion for drawing.
Excelling in school, fond of kho-kho, hide and seek, and in love with jalebis (an Indian sweet), Jayakanth is your average ten-year-old, except he wasn’t always.
Little Jayakanth looking
intensely at the camera
As a young child, he endured multiple episodes of cough and cold, and his parents kept running to the doctor every now and then. His breathlessness did not even allow him to play. But after one surgery, he is now leading a normal life of a pre-teen boy. Fond of watching Tamil movies, his favourite actor is Vijay. I ask him if the esteemed, highest earning South Indian actor and singer is his inspiration to get into acting?
And he coyly tells me, ‘I like him, but I don’t want to become like him. I want to become like me.’
As I say goodbye to him and his family, I think about his unexpected response. His sense of self-esteem makes me wonder why adults stop nurturing self-assurance as we grow up.
Working for an NGO that provides heart treatment for poor children, I always look forward to interacting with these children and their families, as each one of them give me a glimpse of their transformed lives.