In today’s episode, we chat with Sara as she shares the story of her 2-year-old daughter Marian. Sara talks about how she and her husband Paul are approaching their daughter’s NPC diagnosis as a team after initially coping with the news independently. By contacting other families dealing with the same diagnosis, Sara and Paul learned of a clinical trial drug that has helped Marian throughout 2017.
Sara describes her daughter as having the rebellious nature of a typical 2-year-old. With a wide range of curiosity, Marian loves dolls, music, books, cuddling, and Sesame Street. She also looks up her older sister Emily. In this episode, you’ll also hear Sara talk about the family’s success with a social media campaign called the No Pucker Challenge set up by Do Love Live, how GoFundMe dollars go directly toward NPC research for a possible cure, and staying grateful for every little step Marian makes in her development.