Meet Evelyn


Evie, as she is affectionately called, was born healthy and full-term. Before long her difficulty feeding and failure to gain weight was a matter of concern for her parents. Reassured by experts that her behavior was normal her parents watched as their baby girl became increasingly difficult to feed, missed growth milestones and stalled developmentally.

Fifteen months later – after scores of genetic tests, two MRI’s, two EEG’s, comprehensive metabolic, neurologic, gastrologic, and developmental assessments – her condition is just as perplexing as when it was first recognized.

A ‘movement disorder’ is the working diagnosis, the cause is still unknown.

Fast-forward to 3 years old – Evie still has the affectionate nickname ‘mystery baby’ in honor of her elusive diagnosis.

We welcome you to read her story, perhaps we will find another child with such symptoms.

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