Episode 3

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Published on:

13th Feb 2021

Turn Up the Volume - Raghav Gets a Cochlear Implant

When Raghav was born, he failed his newborn hearing test. From that moment on, Sanath and Ramya knew that his hearing was going to be an issue – they just did not know how big an issue it would be.

After many tests, they learned he had auditory neuropathy. It seemed that his hearing was inconsistent; it was like the connection was loose. Sometimes he would react to sound and other times he had no reaction.

They began a search for a solution. 

In this episode, we hear about the options they looked at before finally deciding to go with a Cochlear Implant.  We talk about how a cochlear implant works and the high-tech capabilities it has. We also hear the surprising results of this change and the impact it is having on their lives. 

We want to thank Stealth BioTherapeutics for supporting this episode of Raising Rare. Stealth BioTherapeutics is an innovative biopharmaceutical company developing therapies to treat mitochondrial dysfunction associated with genetic mitochondrial diseases and common diseases of aging.

https://www.stealthbt.com/

To learn more about Cochlear Implants like the one Raghav had placed, go to https://www.cochlear.com/

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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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