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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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This is a Love Story - Jessica Fein
Episode 4
Monday, 7 July, 2025
“I am afraid there is something wrong with her brain”A mother’s intuition is often the first telltale sign of a rare disease. With the deep bonds that are built during pregnancy, there seems to be a connection between mom and kiddo beyond our understanding. But could this be true for an adopted child?Jessica Fein is proof that it can.Her adopted daughter Dalia was born in Guatemala. It was the second time she and her husband had adopted a child from the Central American country. As Dalia fell behind in developmental milestones, Jessica became very concerned. She kept pushing for answers. Eventually Dalia was diagnosed with MERRF (myoclonic epilepsy and ragged red fibers) syndrome.Jessica’s book “Breath Taking: A Memoir of Family, Dreams, and Broken Genes” is about Dalia’s life, the love between mother and child, and the power of leaning into any circumstances through that love. That is what Dalia taught her. Our conversation provides a glimpse into the writing of the book; the process, the pain, and the joy. This conversation really touched Brittany, and she said something beautiful, “We live our lives out loud through Everleigh every day.”
