Raising Rare

Kids EN ↓ 106 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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Author

Raising Rare

Episodes

Finding Help in the Land of (Intellectual) Giants 25.04.2020 22:28

"I was not scared. I was thrilled to be working on a problem this important." Sanath is determined to find treatments for Baby Raghav’s rare disease and he knows he can not do it alone. He needs experts. Professionals who will not only be able to think about ideas, they can test them too. But he has a problem. How is he going to attract the serious attention of these scientists? Sure, th...

Hope. Action. Strength. Hope. 11.04.2020 23:50

“It’s exciting when we start an experimental therapy because we have all the hopes there. But it’s only time that can tell us what exactly will happen.” Raising a child with a rare disease forces parents to do brand new things, to learn, and to grow personally. Sanath has built an elegant roadmap that guides the research plans for Raghav. But at some point, the rubber meets the road...

Meet Raghav's Mom 28.03.2020 30:30

“The name Raising Rare means a lot to me. It conveys exactly the journey we are on. It is very close to my heart and I wanted to do a logo. I wanted to show that there are three of us on this journey, the two of us and Raghav.”   Ramya (a.k.a. Raghav’s Mom) Sanath is not in this fight alone. He has a wonderful partner, his wife Ramya. In this episode we get to hear Ra...

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...