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Raising RareAuthor: 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 sons 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 dont know where this story will go. We do know we want you to join us for the journey. Language: en Genres: Kids & Family, Life Sciences, Parenting, Science Contact email: Get it Feed URL: Get it iTunes ID: Get it Trailer: |
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Rare Parents Performing ALL the Time
Episode 5
Sunday, 13 September, 2026
“I was 24 years old and I was given a baby on life support machines and told to keep it alive.”This is how Shelley Simon’s lifelong performance began. A relentless, unending, and critical performance. A weight of responsibility that nobody expects. Her daughter Zoe was born with Congenital Central Hypoventilation Syndrome – CCHS. This is a condition of the autonomic nervous system that means Zoe needs to be on a ventilator. Currently, she only needs the ventilator while sleeping or when something goes awry. It’s that last part that keeps Shelley on her toes. There is no time to drop the vigilance or step away from the performance. But Shelley has learned to allow Zoe to do all the things kids like to do including skiing and snorkeling. As she has been shaped by Zoe, she has committed to helping others navigate this path, this performance, with courage. We will talk more about this and her book “Beautiful Chaos” in the next episode.
