Thankfully, the medications began to work, and the seizures were under control to a large extent. It pained me every single day to give him those medicines. But I kept telling myself—at least they’re working, and for that, I should be grateful.
Soon after, we moved to Singapore. Life settled into a routine. Sid went to office, my daughter to school, and I was home with Adi. Those hours alone with him were the hardest. I I was constantly overwhelmed. Just looking at him brought an ache I can’t explain. I’d cry often, silently, helplessly. Tears would flow without warning, and the pain was unbearable. The future felt like a dark, endless void—unknown, terrifying.
But Adi… my brave little warrior. Despite everything, he was so full of life—active, curious, and mischievous. You would never guess the battle going on inside his body. To an outsider, he looked like any other healthy, naughty toddler. People would stop and admire him—his big, beautiful eyes, his charming smile. But every compliment felt like a pinch, a painful reminder of the injustice life had dealt us.
We met the specialist our neurologist had referred. He sat us down and explained things no one had till then. That each case was different. That it could be managed. That many children with this rare genetic condition go on to live fulfilling lives. That there is no cure—but there is hope. And then he said something that stayed with me: “We doctors do our best. But there’s a force beyond us. Start believing in that.”
For the first time in months, I felt a tiny flicker of hope. Maybe this wasn’t the end of the world. Maybe miracles happen. Until then, all I knew was from medical reports and terrifying Google searches. None of the previous doctors had taken the time to explain.
That day, I realized just how powerful the right information can be. Knowing what you’re dealing with doesn’t weaken you. It gives you strength. It gives you clarity. It gives you hope.