Episode 3

Published on:

28th Mar 2020

Meet Raghav's Mom

“The name Raising Rare means a lot to me. It conveys exactly the journey we are on. It is very close to my heart and I wanted to do a logo. I wanted to show that there are three of us on this journey, the two of us and Raghav.”   Ramya (a.k.a. Raghav’s Mom)

Sanath is not in this fight alone. He has a wonderful partner, his wife Ramya. In this episode we get to hear Ramya’s story and how she is using her skills and strengths to generate awareness and resources. 

We get a glimpse into why they are such good partners – they look at the situation differently. Sanath sees the community as a source of knowledge and diverse perspectives. Ramya sees the community they are building as a family, a source of shared support. She turns to the SSMD and hypotonia communities for ideas and information about managing everyday challenges. 

Both Sanath and Ramya bring a relentless optimism and resilience to this fight. That spirit shines through in this discussion with the couple.  

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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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