Oct 16, 2019 Latest post:
Jun 26, 2020
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.