Ethan and Me with Geraldine Renton

Listen to RareShare's latest podcast with Geraldine Renton, book author and Irish mother of a Hunter Syndrome child. In this episode, Geraldine tells of her family's journey navigating the challenges of a rare disease that led to the writing of her book Ethan and Me. Hear about their courageous battle with adversity, as they learned of the genetic enzyme deficiency behind the disease and faced its unrelenting consequences, leading to Ethan's passing in late 2020. From learning about Ethan's diagnosis, to locating support and treatments, to just being a mom, the podcast paints a broad perspective about confronting a rare disease. This very candid and detailed account, which includes many lighter enduring moments about life with Ethan, is heartwarming, informative and inspirational. From the book Ethan and Me: "You're now in a secret world. You'll see things you never imagined... yet you'll also witness so many everyday miracles. You'll treasure things most wouldn't think twice about. You'll become an advocate, an educator, a specialist and a therapist, but most of all you'll be Mom or Dad to the most wonderful child."

You can listen to Ethan and Me with Geraldine Renton online on Radio and Podcast. Open the player on this page to stream the available audio.

Ethan and Me with Geraldine Renton is an episode from Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient Navigation by Rare Genomics Institute.

This episode is 45:41 long.

This episode was published on May 26, 2021.

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