Managing the Day With a Child With a Rare Disease

This is a marathon. If we run a marathon like a sprint, we will be burnt out in the first mile.
— Sanath

When Sanath and Ramya learned of Raghav’s diagnosis, life became very busy. They found ways to organize and focus on their work to find a treatment and on their careers. They learned how to manage the stress.

“Too many things came at the same time. Sanath and I could not have a conversation about anything. We would talk two lines and then my mental capacity would be full. I can’t hear anymore. I am not able to process this.” – Ramya

In this episode, we discuss some of their biggest fears and a few dreams they have for Raghav.

Music and Sound Design by Jacob Tompkins

Graphics by Ramya Ramaswamy

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We Need Decisions that Lead to Therapies for GPX4

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The First GPX4 Conference Ever (Part 1)