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Navigating Medical Complexity Coping With Loss Neurojourney

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Nicky

Nicky, mother of Janessa (age), Isaiah (13) and Avery (9). Isaiah and Avery have mitochondrial disease.

Spinal Fusion Surgery: The most difficult decision I've have to make

Spinal Fusion Surgery: The most difficult decision I've have to make

The mom of two sons with mitochondrial disease talks about how she and her husband considered all the variables that went into their decision to ultimately forego spinal surgery for their son. It was all about quality of life. “I still don’t feel totally at peace with this because I have a visual reminder every day that I decided not to do this. But I know I made the best decision for him because I do not want him living in the hospital because of a surgery that he may or may not survive and that he will need to keep getting.”

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