Episode 1

Published on:

29th Feb 2020

Connecting the Dots of Life

“…you can’t connect the dots looking forward; you can only connect them looking backward. So, you have to trust that the dots will somehow connect in your future.” – Steve Jobs

Sanath and Ramya met in grade school. Before they were married, they had all sorts of experiences that prepared them for the unexpected – a son with an ultra-rare developmental disorder. His name is Raghav. 

Raghav was born with a missense genetic variant of GPX4 resulting in a disorder known as Sedaghatian-type Spondyl Metaphyseal Dysplasia (SSMD). But Sanath and Ramya didn’t even know the exact diagnosis until Raghav’s first birthday. Even when they did know the cause, they still were without a clear picture of what would happen next.

In this episode, Sanath introduces us to his family and reflects on the stories of all the dots that they are connecting as they begin the search for a treatment.

A search that no one knows where it will take them or what dots they will experience. 

And they invite you to come along.  

We think you will find it remarkable.

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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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