Episode 10

full
Published on:

29th May 2021

The Unseen and Indirect Costs of Raising a Rare Child

The costs of raising a rare child are daunting. Last time, we talked about the medical costs. In part 2 of the conversation, we are going to go a little bit deeper.  We are going to discuss the impact on Sanath and Ramya’s lives, their mental health, and their relationships.

In addition to the impact on their lives, Raghav’s condition takes away from their time at work and the contributions they can make. This could prevent them from advancing their careers. Fortunately, their employers have been especially good at accommodating their needs and providing them the flexibility they need. 

This is one of our shorter episodes, but we think you will agree that it is one of the most important. 

You can listen to Raising Rare directly or subscribe on iTunes, Spotify, Google Podcasts, YouTube, Facebook and more. You can follow us on twitter @Raising_Rare

Please donate to https://cureGPX4 or support Salem Oaks prodiction costs at https://patreon.com/salemoaks

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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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