Living with PKU

Continuing with the Family Life series, I came across a story about PKU.  In Raising Baby Caroline: Life With PKU, by Michelle Forman, we see life from the perspective of the parents of a child diagnosed with PKU.  Although a harsh pill to swallow at first, newborn screening certainly played an important role, as acknowledged by the parents.  It is also important to note the close relationship between the family and the various providers, from Pediatrician to Dietitian, in providing maximum potential for both mental and physical growth.  My only question is, as noted in the story, why are state laws so lax on requiring insurance to provide necessary supplies for the continued well being of these individuals?

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2 thoughts on “Living with PKU

  1. Amazing post! Thank you so much for sharing such an inspiring story that helps to emphasize the importance of newborn screening! This was a heartwarming portrayal of a family overcoming medical obstacles, together. It does seem a shame that a family would feel compelled to have to move from one state to another to have certain aspects of their child’s medical care covered. You would think that there would be more uniformity in the approach to reimbursement of medical care by individual insurance carrier regardless of state mandates, and in particular, when you are considering the overall foundational well being of a child.That obviously is not the case, making a complicated situation even more complicated. Thank you for highlighting the diagnosis of PKU, and the kind of obstacles that are faced by ordinary people in obtaining the care that they need for their children. Metta, Duane

  2. Thanks so much for sharing this story! I had a wonderful time chatting with Caroline’s mother, although it was not always so positive as you noted. From what I hear, Caroline is doing great! Thanks again! I really appreciate it!

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