Josiah’s Story

Site created on October 16, 2019

We are using this site to keep family & friends updated all in one place. We understand not everyone is in the position to help financially but simply sharing this page can go along way in supporting Josiah’s fight for his life.

Around Josiah’s 1st birthday he the 73rd person in the world diagnosed with TUBB4A- related luekodystrophy. TUBB4A aka H-ABC is a rare genetic disorder that progressively damages the nervous system. It specifically targets two parts of the brain : the basal ganglia and the cerebellum, which control the body’s actions and movement.

There is no known cure for H-ABC, but Josiah works hard in physical, occupational, and vision therapy every week to help manage his symptoms.

Our goal is to raise money for Josiah’s medical needs and a wheelchair accessible vehicle to get to and from appointments and activities.

Thank you to friends and family for your support and prayers as we make Josiah’s life as happy & comfortable as can be. 

Newest Update

Journal entry by Morgan Elizabeth

Josiah & I stayed at CHOP for EEG monitoring/video from Friday til Monday. Thankfully the episodes are not seizure activity. He’s been diagnosed with breathe holding spells and will hopefully out grow them. We switched his tube feed formula to something more natural while we were there. We go back to CHOP Monday for a swallow study so we can start his speech therapy back up and hopefully get him eating some things by mouth. Josiah’s thrilled that stores are starting to open back up, he loves to get out. We received have been blessed with a donation of $5,000 towards his wheel chair accessible vehicle this week. We still have a long way to go but we are taking it day by day. 
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