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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.

Driving Science to Cure FOXG1 Syndrome

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Labels

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

foxg1 josie
foxg1 research foundation
FOXG1 syndrome
gemmotherapy
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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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