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Nihira’s Story

Pune, Maharashtra


Nihira was diagnosed with CDKL5 Deficiency Disorder in early infancy.

From the very beginning, seizures became a daily struggle, affecting not just her health but the entire family’s emotional and financial well-being.

Despite limited treatment options in India, her parents continue to fight for awareness, research, and access to future gene therapies — not just for Nihira, but for every child affected by CDKL5.

Hope is in our DNA.

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CDKL5 South Asia