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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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100th EPISODE A New Season, A New Era
Episode 1
Monday, 27 April, 2026
100 EPISODES!!!It is hard to believe that over 6 years ago, we started Raising Rare as an experiment. How would people react to following the life of a young family affected by an ultra-rare disease? The response has been wonderful. The experience has been transforming. We thank Sanath Kumar Ramesh for sharing his stories all these years.And with our 100th Episode, we start a new era for Raising Rare. Brittany Ratke will be my partner, riding solo in the co-host seat. Brittany and Sanath have shared the co-host role since 2022. With this change, we are going to focus more on Brittany’s family and slowly shape the show to her story and her style. Laughter, tears, and heartfelt questions.Our hope is that our conversation will bring more people from the rare disease community together. As we reflect, we realize how many amazing people we have met along the way.Brittany shares some positive developments in their care team, Everleigh’s school, and family life. They even celebrated Rare Disease Day at school.We also touched on the impact on and of siblings of kiddos with a rare disease. They grow up faster than a lot of kids. They share in ways most people would not realize.We are looking forward to a great season.
