Batten Disease Diagnosis Sparks Family’s Advocacy

Herndon began to hold his books close to his face. He then struggled to know what color things were. These were the signs that warned of something serious.

Although Will didn’t learn to speak until he was 3, his parents weren’t overly concerned.

In every other way, he was a healthy, normal child when he started kindergarten. Then Will’s teacher noticed that he started to hold his books very close to his face. Around the same time, his mother overheard Will ask his younger brother what color a crayon was. This began a journey through multiple eye examinations and a growing fear that something was seriously wrong.

Eventually, Will’s parents—Missy and Wayne Herndon—were referred to Texas Children’s Genetics Center for testing. The diagnosis was much more complex than a vision problem. Will had Batten disease, a genetic neurodegenerative disorder.

Missy and Wayne have since become relentless advocates for Batten disease research. They are generous supporters of Texas Children’s and of the Beyond Batten Disease Foundation, which sponsors a researcher at the hospital who is focused on Batten and similar diseases.