Episode 12

full
Published on:

18th Jul 2020

Deep Gratitude

It’s one thing to be transactional when we say thank you. It’s another thing to say thank you for life. All we can hope to do is return the favor for them when they need help.  Sanath Ramesh

We have discussed the importance of community to families raising a child with a rare disease before. In Episode 12, Sanath says, “Thank You” to three different communities who are crucial for Sanath and Ramya’s efforts to find a cure for Raghav.  These communities start with some of their closest friends, expand out to other rare disease parents, and then even farther to even more families.  Sanath shares some wonderful examples of how these people have made real differences in their lives.  

Sound Design and Music: Jacob Tompkins

Graphics: Ramya Ramswamy

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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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