Episode 11

full
Published on:

4th Jul 2020

Learning His Language

He is using everything he can to communicate. I that it is one of his strongest skills at this point. -Sanath Ramesh. 

Raising a child with a rare disease means that everything is just a little bit harder. There are no simple trips to the doctor. Any trip in the car requires lifting this growing boy into his seat, and he cannot even help. 

In this episode Sanath paints a vivid picture of what this means for Ramya and him. He also reports that Raghav is developing communication skills. Given his condition, this means that his family needs to learn what he is trying to tell them. We hope you enjoy hearing about this very important aspect of their life.

Raising Rare needs your support. 

If your company is interested, please contact us at sponsorship@raisingrare.fm 

If you would like to personally donate, please visit https://cureGPX4.org/donate 

Music: Jacob Tompkins (losstudiosnc@gmail.com)

Graphic Design: Ramya Ramaswamy (ramya@curegpx4.org)

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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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