Raising Rare

Kids EN ↓ 103 episodes

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 th...

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Raising Rare

Episodes

We Are Not Alone on This Climb 14.03.2020 22:26

“My thought process is shaped by the people I speak with” - Sanath When we last talked to Sanath, he and Ramya had no idea what was going to happen next. They were heading into the unknown, and they felt very alone. In this episode, we discuss how they got started attacking the problem and pulling together the resources they need to find a treatment and cure for Raghav. It is the kind of...

Connecting the Dots of Life 29.02.2020 35:22

“…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. ...

Introducing Raising Rare 26.02.2020 5:05

“Our little boy Raghav is a happy kid with a contagious smile. Behind his smile is a very serious medical condition if left untreated can be fatal. But here’s the catch there is no treatment.” Imagine the excitement of becoming a new parent and then within hours finding out your child has a serious developmental disorder. What would your reaction be? Where would you go for help? Who...