The difference between life and death...
Is being your own best health care advocate. Be an empowered patient.
By sharing our story, we hope to show you the importance of taking an active, aggressive approach to your healthcare. Be an empowered patient and know your doctors approach to patient care.
On May 15, 2009 our two year old daughter, Neely, caught a virus. What we didn’t know then, was that the virus had triggered her immune system to attack her brain and spinal chord. Over the next 12 days, Neely went into a downward spiral that left her unable to talk, walk, move, swallow or even blink on her own.
Neely’s bloodwork, her pediatrician, and most of her early symptoms indicated that it was just a virus, but we felt something was dreadfully wrong. We didn’t feel comfortable with the diagnosis, couldn’t find answers to our questions, and didn’t know where or who to turn to for help. It almost cost us our daughter’s life.
Neely was suffering from a rare condition called Acute Disseminating Encephalomyelitis (ADEM) and needed immediate treatment. There was no time to lose. There is no substitute for a parents instincts, only you know best how to fulfill the needs of your child. Take a few minutes to read Neely’s Story and see the path we traveled to find our heroes….the doctors and nurses that helped us save Neely’s life.
- Our Path to Diagnosis- Actual Journal Entries from Neely’s Mom
- One Year Later – Perspective from Neely’s Mom
- Why I Built this Site – Telling Our Story
- Meet Neely’s Family
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