juvenile batten disease | Missy Herndon

28 Feb 2023

RARE+HOPE

February 28, 2023

batten disease, houston tx, juvenile batten disease, missy Herndon, rare disease, rare disease day, rare disease research, texas children's hospital, will Herndon fund Blog

Today is Rare Disease Day. Today I start my new writing endeavor: Sharing a glimpse into our world of RARE + HOPE...

16 Jul 2020

A prayer answered: Will Saw Today!

July 16, 2020

batten disease, Herndon family, juvenile batten disease, missy Herndon, Missy Herndon Herndon family, rare disease, the woodlands, the woodlands TX, will herndon, will Herndon fund, woodlands will herndon Blog

Believing in the impossible becoming possible? This Will Wednesday, I thought I would share an experience we had with Wil...

27 Jan 2019

A Metaphor for My Life

January 27, 2019

batten disease, houston blogger, juvenile batten disease, missy Herndon, rare disease Blog

This view… like a metaphor for my life. As I sit on this beautiful beach at 43 years and 2 days, I look out at all its be...

26 Feb 2018

A Rare Perspective

February 26, 2018

batten disease, houston tx, juvenile batten disease, missy Herndon, rare disease day, rare disease research, texas children's hospital, will Herndon fund Blog

24 eyes staring back at me. Looks of worry, fear, piercing eyes of despair. I recognize those eyes, those feelings. I s...