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

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In 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_settings

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1. Nutrition Equity Episode 12: HCU Awareness Month Cobalamin G Heather Parent (00:00:00)

2. childs diagnosis story (00:02:39)

3. deer story fed but not nourished (00:03:48)

4. 20 step schedule (brain) (00:05:06)

5. Symptoms (00:08:28)

6. Physical and Occupational Therapy (00:09:18)

7. ER Visit (00:09:55)

8. Cody responds (00:10:52)

9. Medical student hero (00:11:18)

10. teaching hospital like to solve problems (00:12:47)

11. daily struggles (00:14:43)

12. others don'r understand (00:15:43)

13. popularity with fire fighters (00:17:13)

14. hope (00:17:41)

15. vitamins are covered by the MNEA (00:19:31)

16. Favorite foods (00:22:28)

17. favorite foods Cobalamin patients don't follow a low protein diet (00:26:39)

18. Cobalamin disorders are often missed on Newborn Screening (00:28:46)

19. Full panel genetic testing is required in most cases for diagnosis (00:29:13)

20. How the MNEA would help (00:31:42)

21. advocating (00:34:06)

22. personal stories (00:37:39)

23. awareness and support (00:41:34)

24. how lawmakers, doctors, and the general public can empathize (00:43:46)

25. resources (00:48:00)

26. hopes and aspiraspirations for the future (00:51:21)

27. advice to newly diagnosed (00:53:08)