Courageously Rare: Luke's MOG Journey
Day 4, eye doctor and ivig stay #7
Eeg and ivig stay 7
Eeg and ivig stay 7
Eeg and ivig stay 7
Hospital stay number 7 (I'm starting to lose count)
Dr. Greenberg's visit
Miracle Flights to Dallas!
Leaving visit #6, almost have a diagnosis!
Hospital stay number 6
Courageously Rare: Luke's MOG Journey
Day 4, eye doctor and ivig stay #7
Eeg and ivig stay 7
Eeg and ivig stay 7
Eeg and ivig stay 7
Hospital stay number 7 (I'm starting to lose count)
Dr. Greenberg's visit
Miracle Flights to Dallas!
Leaving visit #6, almost have a diagnosis!
Hospital stay number 6
Overview

Courageously Rare: Luke's MOG Journey

Hello and welcome to Luke's journey! Luke is 7 years old and up until 2 years ago, he was a very healthy, happy little boy. Luke has recently been diagnosed with a rare neuro-immune disease called MOG-AB disease (his immune system attacks his brain and central nervous system) on top of MDEM (inflammation of his brain and spinal cord) and psuedo-tumor cerebri aka intracranial hypertension (too much pressure/fluid on his brain causing blindness). It took almost 2 years and 2 brain surgeries to finally find out what was causing him so much trouble! Luke has a long road ahead of him, but hopefully with more awareness of his diseases, a cure will come. Until then, we will take it day by day and pray for...

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Latest Journal Entries

Day 4, eye doctor and ivig stay #7

Day 4, eye doctor and ivig stay #7

April 04th, 2019

Hey everyone! Only a little news today. Luke has been more tired and is still napping and has been since...

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Eeg and ivig stay 7

Eeg and ivig stay 7

April 03rd, 2019

Update on Luke! There's not too much that's been happening around here. Yesterday morning Luke had an EEG. There was...

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Hospital stay number 7 (I'm starting to lose count)

Hospital stay number 7 (I'm starting to lose count)

April 01st, 2019

It's late, but I have time now to post. We are back at our home away from home. This morning...

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