The doctor says a name you have never heard before, then explains, gently, that it is what your child has. The room goes quiet. Somewhere in the sentence that follows, how rare it is, what it might mean for your child's life, most of it stops making sense.

You nod, and might even ask a question you already know the answer to, just to feel like you are still part of the conversation.

Over 4,001 rare diseases were on record with the Indian Council of Medical Research as of 31 October 2021, and roughly 80% are genetic, which means they disproportionately affect children. 

Reaching that moment alone, the one where a name finally exists for what your child has been going through, can take years of tests and second opinions, a journey several Indian families fighting for treatment access have described as an ordeal in itself. 

What gets spoken about even less is what comes after: how you sit with the news, find the words for your child, prepare their siblings, and explain it to a joint family that will have questions, opinions and sometimes, unhelpful theories of its own. Child psychologists say there is a workable order to get through all of it.

Absorb the shock before you explain it

“The instinct after a diagnosis is to start solving immediately. Researching treatment, calling relatives, booking the next appointment. But we generally advise parents to resist this for the first few days,” explains Kalyani Raman, a Chennai-based child psychologist specialising in family counselling.

She recommends bringing another adult to follow-up appointments to take........

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