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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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Summertime...It's Different for Us
Episode 3
Friday, 26 June, 2026
Our conversation explores the end of the school year, summer planning, managing health challenges, and finding peace amidst life's unpredictability. Brittany and Kevin share insights on delegation, self-care, and maintaining perspective during busy seasons.A note from Kevin: As we were preparing to publish this episode, Brittany and her family faced another unexpected challenge. Everleigh had a severe seizure episode on Father’s Day. As of today, she has been hospitalized for nearly a week and is undergoing several tests. We ask our listeners to keep their whole family in your thoughts and prayers. This situation serves to remind us just how challenging raising kiddos with rare diseases can be. It is ironic that our discussion, recorded nearly a month ago, covered the challenges of being prepared for unpredictability.
