EPISODE · Jan 25, 2025 · 41 MIN
PKU With Danielle From Maryland
from Rare Connection · host Joanna
Send us Fan MailIn this episode I talk with Danielle, a parent of a daughter Elsa with PKU and children's book author. Her book Rosey Racoon Has PKU is available on Amazon, See link below. In this episode I talk with Danielle about Her daughter's diagnosis with PKU, and the fears and challenges she went through as a parent, her daughter's symptoms when her levels are high VS when they are normal, The PKU diet, Advice to new parents, her book and much more. Be sure to check out Rosey Racoon Has PKU, https://www.amazon.com/Rosey-Raccoon-Has-Danielle-Freeman/dp/B0DP7V3WJ7/ref=sr_1_1?crid=JWP20L48CIPZ&dib=eyJ2IjoiMSJ9.2cLjc2XCV1FFqrwpK-Aicf_pKS6CDtvw6d_v6Udn5HI14e5r_aWcuRcvQ3g4nNE7GnJTsBVr2mDQMdr8Ip5CiVy0crKMCufcYKlnm-6qs7Yvjckvh5EGCGOnKNkOBkkh-h2cd6DMumtCVjY2GjiZ9g.wAbWMtFkDAIDP0T880pdYysz9iMl4mx6lvpsujCEapE&dib_tag=se&keywords=danielle+freeman+book&qid=1737785660&sprefix=Danielle+Free%2Caps%2C166&sr=8-1Chapter Markers00:00 Intro02:16 diagnisis story04:45 Most challenging moments early on06:15 How a high blood level affects Danielle's daughter07:13 How low blood levels affect Danielle's daughter07:50 Perfect Level08:26 Protein tolerance09:21 PKU Explained10:27 Improvements Danielle Would Like ti see in the newborn screening12:33 Tips for managing the low protein diet15:12 Medical food coverage16:48 products and resources that are helpful19:31 Projects & initiatives20:37 Inspiration for Rosie The Racoon Has PKU21:49 Main Message & take away22:47 Process of writting and challenges24:15 Book intentions & reader responses29:00 Book statistics29:31 How the book contributes to PKU Awareness31:26 future books32:10 How parenting a child with PKU has changed Danielle's prespective33:15 Advice for other parents35:19 Hopes for PKU advancement & treatment37:41 Danielle's future as both an advocate & an Author38:26 conclusionSupport the show
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PKU With Danielle From Maryland
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