Episode 4

full
Published on:

11th Apr 2020

Hope. Action. Strength. Hope.

“It’s exciting when we start an experimental therapy because we have all the hopes there. But it’s only time that can tell us what exactly will happen.”

Raising a child with a rare disease forces parents to do brand new things, to learn, and to grow personally. Sanath has built an elegant roadmap that guides the research plans for Raghav. But at some point, the rubber meets the road. 

In this episode, we discuss the heroic work that Sanath undertook to start a compassionate use study to look at whether an experimental drug could improve Raghav’s condition. 

He learned about the paperwork, ethics reviews, and time required to get such a study started. He found that not everything was in his control but that he could take charge of the things that are. 

Doing this work forced him to wrestle with his own emotions and grow stronger.

Hope. Action. Strength. Hope.

You can listen to Raising Rare directly or subscribe on iTunes, Spotify, Google Podcasts, YouTube, Facebook and more. You can follow us on twitter @Raising_Rare.

Sound design and music by Jacob Tompkins

Graphis 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.
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About your hosts

Sanath Kumar Ramesh

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Kevin Freiert

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