“It gets overwhelming from time to time, but when I see Neel in his element, nothing else matters.”

“4 days after he was born, Neel stopped taking my feed; he’d just sleep all day. Being a new mother, I thought I had done something wrong so I rushed him to the hospital. The doctors were just as confused, so they put him under observation for 24 hours. Those 24 hours turned into 11 days; after several tests Neel was diagnosed with a condition that leads to organ failure; something I had zero knowledge about.

I vividly remember the doctors sat me down and gave me an insight into everything that could go wrong. Phrases like, ‘stunted growth’, ‘short life span’ and ‘special child’ were thrown at me. I walked out of that room with jelly legs and a heavy heart.

I couldn’t believe my little boy, who had just opened his eyes to the world, was already in so much pain. When his treatment began, I didn’t leave his side. I wanted to spend every waking moment with him because I didn’t know how much time he had. I still don’t… On day 5, Neel’s pulse dropped– he was put on a ventilator. Before he was taken in, I held his tiny hand and whispered, ‘I understand your pain, it’s okay if you want to let go.’

But like my husband always says, ‘Our boy is a fighter!’ He fought hard and a month later we took him home. Honestly, bringing up a child with this condition takes a toll on you– financially, physically and emotionally. His food has to be shipped from the US because there are no manufacturers in India. I have to be extra careful about infections; even a common cold could be fatal.

It gets overwhelming from time to time, but when I see Neel in his element, nothing else matters. He loves being outdoors, so every time he sees someone put on a mask, he starts crawling towards the gate. And if you raise your voice at him, he will ‘hup’ you. How does one not melt?

Of course I still have my off days; a couple of days ago a 12 year old girl with a similar condition passed away… When I heard the news, I sank. I spent the entire day crying until Neel crawled towards me and said one word, ‘Happy!’ and honestly, it’s the happiest I’ve ever felt!

ever felt! The doctors had said he’s one in a billion, and he really is. Neel turned 21 months old today. He’s taught me so much about valuing every moment; of not giving up and fighting against the odds.

Every birthday celebrated is a milestone, each day gone by is an achievement. But whilst we worry about the small things, he’s busy loving life. He’s always so happy; you will never see him cry. Just look!”

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