Nutrition Equity Episode 12: HCU Awareness Month Cobalamin G Heather Parent

Send us Fan MailIn this episode I talk with Heather a parent of a child with Cobalamin G.  Cobalmin disorders are named for the order in which they were discovered.  Some Cobalmin disorders fall under the Homocystinuria Family, some are Methyl Malonic acidemia's and some are both.  They are tested for on Newborn screening, but often missed.  Heather's child Kodi is one of the children who almost lost his life to Cobalamin G.  Kodi suffers from Seizures and Cerebral Palzy as a result of late diagnosis and he is also tube fed through a feeding tube that is surgically inserted into his stomach.  Thanks to a medical student he lives today.  He is can say a couple words, and he signs, but for the most part at 3 years old he is non-verbal.    If you would like to help us fight for the Medical Nutrition Equity act please visit nutritionequity.org.  On the website you can read patient stories, see state by state coverage, write your senate and house reps and much more.  Please consider subscribing to this podcast and writing a review.  You can also support the effort by donating to it, anything you are willing to give could greatly help the cause.  Thanks you for listening. https://www.buzzsprout.com/2204433/monetization/supporter_settingsChapter Markers0:00:00 Intro0:02:33 What is Cobalamin G & how does it effect Heather's Families lives0:07:46 How Cody was diagnosed0:14:34 Daily Struggles0:22:18 Cody's favorite foods0:31:42 How the passage of the MNEA would help Cody0:34:12 Milestones Achieved as an advocate0:37:34 Personal stories0:41:32 The need for awareness & support for people with metabolic disorders0:43:42 How you can understand and empathise with metabolic patients0:48:01 Resources0:51:12 Hopes for the future0:53:03 Advice for newly diagnosed patients0:55:56 ConclusionSupport the show