Living with MSUD

I recently added the MSUD page to the disorders list and felt compelled to continue adding a story showing family life with these disorders.  I found this article, My Child Has Maple Syrup Urine Disease.: Gage’s Story.  Although not a lot of detail is given in presentation and day to day treatment, one of the most impacting aspects was the comparison of another person affected and the differences in their outcomes.  Rarely is it seen first hand, as a parent, the effectiveness of early diagnosis and treatment.  As much as it breaks my heart to hear of the misfortune by this writer’s family member with the same disorder, it will be a constant reminder of just how vigilant one must be in the care of these disorders.  The reference to the other child not getting the care necessary begs the question, was the information conveyed to these parents?

1 thought on “Living with MSUD

  1. Dear RGMDO, thank you for sharing this candid story of two individuals, both bearing identical diagnosis, but both having very different and diverse outcomes. Early diagnosis is the key to ensuring a positive outcome, and that fact, just can not be stressed enough! The cost otherwise, and we are not talking money here, is immeasurable! This entry was heartfelt and informative. Thank you for helping to illuminate the challenges that families face, day to day, when confronting a life long diagnosis. Keep up the great work! Metta, Duane

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