Nicole
A Terrifying Trip to the NYU Emergency Room
There's Always Been a Rainbow.. "When it rains, it pours, but you didn't even notice... it ain't rainin' anymore. It's hard to breathe...
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Josie's Journey
Through her mama's voice, along the road to find a cure for FOXG1 syndrome
Nicole
Oct 24, 20214 min read
Josie Starts Fifth Grade - Covid Style.
"A Fifth of Beethoven" The beginning of September and our social media feeds are covered with those adorable back to school photos. I do...
Nicole
Aug 23, 20214 min read
Understanding The Science Behind the FOXG1 Research Foundation.
Science, I Thought That I Could Help. What would inspire me to come back to this blog after nearly four years since my last post? A...
Nicole
Dec 1, 20175 min read
A Year in the Life of FOXG1 Syndrome - Seizures, G-tube, and Science - oh my
"When you're lost, you can look and you will find me... time after time." It's been a long time since I've written here. Over a year. I...
Nicole
Oct 17, 20162 min read
Josie's "Songs of Love" performed at an Allman Brother's Tribute
Gotta Let Your Soul Shine.....Shine 'til the break of day. Josie's teacher has been sending me some photos of our little school girl. She...
Nicole
Sep 8, 20163 min read
Josie Starts Kindergarten at A School for Special Needs.
Good Morning Little School Girl Today is momentous. I am writing this from the second floor, in the boardroom aka "the parents waiting...
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