EAT YOUR VEGGIES – GO LOW PROTEIN

I’m questioned all the time about why my daughter all of a sudden changed her diet – I am so proud of the “journey”. I can’t imagine what it would have been like dealing with a diagnosis after getting a call from the pediatrician explaining to me that my newborn had HCU. Support Networks like HCU-USA was not available til recently and because of those like Danae Austin Bartke, Gabbi Lewis, Amber Gibson, Karen Maiocco Lewis, there’s support and friendship – I can’t tell you why or how to explain the unexplainable but I can tell you that some of the “rare” challenges we faced early on could have been prevented if we had known about EveryLife Foundation for Rare Diseases and Rare Disease Advocacy – Can you imagine the pediatrician who was on the other end of the line when I called in … I want to continue to thank every healthcare professional for their continued patience and it only took 23 years. Just how #RARE are you??

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