A deeply personal story of love, resilience, and advocacy shines a light on the hidden struggles faced by thousands of Indian families.
A rare disease activist and advocate, Saurabh Singh has penned an immensely powerful debut memoir titled Shaurya: A Father’s Promise that chronicles the extraordinary true story of how one family’s struggle transcended the confines of a hospital to become a movement.
Saurabh and his wife Richa, found out that their young son was diagnosed with a rare and life-threatening genetic disorder called Hunter Syndrome (MPS II), and their lives took a dramatic turn. Medical uncertainty, few treatment choices, financial hardships, and the realization that many families with rare diseases live in silence followed the diagnosis.
But instead of accepting helplessness, Saurabh made a decision that would reshape his life.
“The day I heard my son’s diagnosis, I felt as though the ground had disappeared beneath my feet,” he recalls. “But when you are a parent, you don’t have the privilege of giving up. You may be frightened, but you keep moving because your child is depending on you.”
A Father’s Journey Turns into a Public Cause
The initial treatment search became a much bigger mission. Saurabh began writing to government officials, pharmaceutical companies, reading medical literature, and all other legal measures he could think of to ensure his son’s right to treatment. Over time, his work went beyond his family and was part of a larger campaign for awareness and policy change for rare diseases in India.
As an Advocate at the Jharkhand High Court and Co-Founder and Director of Rare Diseases India Foundation (RDIF), he is still working with families, doctors, and policymakers to make patients with rare diseases visible.
“I never set out to become an activist,” says Saurabh. “I was simply trying to save my child. Along the way, I realised that there were thousands of parents carrying the same fears and fighting the same battles. This book belongs to them as much as it belongs to us.”
More Than a Memoir
The book speaks to the issues of diagnosis and treatment for rare diseases, but it is foremost a story of human beings. It evokes the feelings of parenthood, the fragility of hope, and the unobtrusive acts of courage that hold families together through the hardest of times.
Shaurya: A Father’s Promise isn’t just about loss or suffering; it is about resilience. It’s a tale about doing something rather than nothing, believing in something rather than giving up, showing compassion rather than being indifferent.
The memoir also provides readers with a rare insight into the personal aspects of public advocacy. Saurabh recounts his experiences of speaking up in court, writing to policymakers, and talking to doctors and caregivers to show how people can impact bigger systems when they refuse to stay silent.
A Story for All Readers
While based on the experience of one family, the book transcends the world of medicine or law. It’s a tale for parents, caregivers, healthcare providers, policymakers, and anyone who’s ever felt uncertain, with no clear path forward.
At its heart, Shaurya: A Father’s Promise asks a simple but powerful question: what would any parent do if a child’s future depended on refusing to surrender?
As Saurabh Singh answers that question, the reader is left with a heartfelt account of the power of family, the power of hope, and the power of a single promise delivered with unwavering resolve that can change a lot of lives.
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