HeyJaredRaising 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.
- Indexed episodes, last 90 days
- 2
- Latest publication
- Sep 14, 2026
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- Aug 14, 2026
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Rare Parents Performing ALL the Time (opens the original)
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“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 somethi
Embracing the Suck - A Parent and Physician's Journey with Rare Disease (opens the original)
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“I have no idea what I'm doing. I've never done this before. I am a pediatrician, but I have not been trained on this . I couldn't be more qualified to be Soraya's mother, and yet I am clueless.” Tasha Faruqui In this conversation, Dr. Tasha Faruqui shares her lived experience raising her daughter who has been diagnosed with TAOK-1. It is a story of simultaneously seeing two sides of the rare disease experience. And that surfaces a ton of insights that parents raising kiddos with rare disease ca
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