Episode 7

full
Published on:

22nd May 2020

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

Show artwork for Raising Rare

About the Podcast

Raising Rare
Imagine the excitement of becoming a new parent and then within hours finding out your child has a serious developmental disorder.

That is exactly where Sanath Kumar Ramesh found himself in the summer of 2018. One year later, on his son’s first birthday, they found out that their son, Raghav, had an extremely rare mutation of the GPX4 gene. At the time, doctors told them that Raghav may be the only one on the planet with this genetic variant who had lived beyond one month of life. The prognosis is completely unknown.

They were alone.

They were scared.

And then they went into action.

And now they want to share their story.

Every couple of weeks Raising Rare will give you an update on baby Raghav as he grows up. We will also share how Sanath and his wife Ramya are driving toward a treatment for their son. We will explore the science that Sanath is initiating, their efforts to fund that research, and the people they meet along the way. We will also hear how the family adjusts to challenges and changes that they are faced with. Most importantly, we will share the wisdom they gain along the way so that other Rare Parents can learn from their steps and missteps.

We don’t know where this story will go. We do know we want you to join us for the journey.
Donate to Cure SSMD

About your hosts

Sanath Kumar Ramesh

Profile picture for Sanath Kumar Ramesh

Kevin Freiert

Profile picture for Kevin Freiert