I had started working as a cabin crew in Indigo Airlines, and later I got married. Everything was perfect, and I was living my dream life until one day, my life turned upside down. My life changed when one day, my son got a high fever. He was only four months old. We admitted him to the hospital – Doctors took his blood test, did MRI & CT scans too. Everything went normal; however, nobody could explain the cause of it. We took medications for seizure control, but they didn’t work out either! Eventually, I decided to leave my job, and I became a full-time mother.
His condition started worsening only during the lockdown. We took him to a doctor in Delhi who suggested some genetic tests. We got to know that (his name) had a kind of genetic defect called Dravet Syndrome (SMEI). It is a very rare disease, and the medicines for it have to be exported as they are not available in India.
Shaurya is nine years old now, and he speaks very little. We understand what he says only through his hand gestures. Whenever he gets seizures, his body starts shivering vigorously, and we got to calm him. If we don’t look after him, he may hurt himself. Many times he leaves the house on his own and doesn’t know where he is going or what he’s doing. We have to keep a watch on him 24*7. He gets 10-20 seizures in a month despite the medications. At that time, all we do is hold his hands and sit beside him. Human touch indeed works!
Shaurya loves to be around people and play with boys around his age but gets disheartened every time as people treat him differently, but even then he has a big smile on his face whenever one sees him. There’s a 50% chance that Shaurya’s child may get this genetic disorder as well, but right now, I am only living in the present.
Though I cannot send my children to school, I make sure that he learns all the basics at home. He loves to tap his feet on music and dance like there is no tomorrow and this is how he lives his life- like there is no tomorrow and this is how all of you should learn to live our lives too.