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nenaelise's picture
nenaelise
Joined: 02/07/2010

 Hi!  My name is Nena.  I am mom to Reese who just turned four at the end of January.  He was diagnosed with a mitochondrial disease, complex IV deficiency via a muscle biopsy April 2007. His mito affects him neurologically, GI-wise and muscularly.   His other diagnoses include epilepsy, failure to thrive, j-tube fed, significant developmental delay.

We have learned much from our littlest boy.  His 9 year old brother is a wonder and the best big brother ever.  I would give anything to have "normal," but we never will have that.  We will cherish each moment that we have and live in today.  

Looking forward to getting to know you all. 

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