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Josie's Journey

Through her mama's voice, along the road to find a cure for FOXG1 syndrome

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Nicole Zeitzer Johnson: I'm the mom of Josie and big brother Tanner. I'm keeping this blog to chronicle Josie's journey. Josie has a rare genetic condition called FOXG1 Syndrome. We were told in 2014 that she may never walk or talk or do most things, and she struggles with seizures and now has a feeding tube. I have a strong positive feeling that this will Josie's story to tell one day. I have co-founded the FOXG1 Research Foundation and we are driving the science to find a cure for FOXG1 Syndrome. Josie is so loved and as far as I'm concerned, just like her brother, she is perfect. Side note: I'm also a huge music lover and I'll probably add a music reference in each post. Thank you for reading about and coming along Josie's journey.

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Labels

Chan Zuckerberg Initiative
cortical vision impairment
cure foxg1
CVI
developmental delays
Dr. Christine Roman-Lantzy
dr. palevsky
epilepsy
foxg1
foxg1 awareness

foxg1 josie
foxg1 research foundation
FOXG1 syndrome
gemmotherapy
goose
hbot
hyperbarics oxygen therapy
interpol
music
Nasha Fitter
rare disease
special needs parenting
special needs parents
special needs school
vaccines
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Josie 6 years old

This is 6. Josie's birthday celebration at school

Josie at 5 years old

with her big brother

Josie 4 years old

Josie 3 years old

Josie 2 years old!

Baby doll loves her baby doll

Josie 15 months

Jojo Beanie

Josie at 9 months old

Sibling love

Josie and big brother Tanner

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