Learn more about
Batten Disease & Gavin’s Story

Batten disease is a rare, progressive neurological disorder that affects children and young adults. For families like Gavin’s, the journey often begins with subtle changes that are easy to miss — trouble in school, vision challenges, or difficulty sleeping — long before anyone has a name for what’s happening. This page is designed to help you understand the basics of Batten disease, learn more about Gavin’s experience, and discover ways you can make a difference.

Frequently asked questions

  • Batten disease is the general term for a group of rare, inherited disorders known as Neuronal Ceroid Lipofuscinoses (NCLs). These conditions cause a buildup of harmful materials in the brain and body, leading to neurological decline over time.

  • Symptoms vary by type and age of onset, but often include:

    • Seizures

    • Vision loss

    • Difficulty with balance or coordination

    • Changes in learning or behavior

    • Sleep disturbances

    • Gradual loss of motor and cognitive abilities

  • Gavin was diagnosed with NCL Type 1, a form of Batten disease identified through neurological tests and a specialized retinal exam.

  • Diagnosis usually involves a combination of:

    • EEGs to monitor seizures

    • MRI scans

    • Genetic testing

    • Vision tests (like ERG or retinal imaging)

    • Neurological evaluations

    For many families, the path to diagnosis is long and filled with uncertainty.

  • There is currently no cure for Batten disease. Treatments focus on managing symptoms, improving quality of life, and supporting the family along the journey.

  • Batten disease is extremely rare — affecting an estimated 2 to 4 out of every 100,000 children in the United States. This is why awareness, research, and community support are so important.

A young man in a green graduation gown and cap smiling outdoors.

Gavin’s Story

Gavin’s journey began like many families’ stories — with symptoms that didn’t immediately point to a rare disease.

Over time, Gavin experienced:

  • Difficulty grasping new concepts

  • Sleep loss from seizures during REM

  • Vision challenges that made it hard to find lines on paper or see objects clearly

Multiple specialists worked to understand the cause, and in time, Gavin was diagnosed with Batten disease (NCL Type 1) — a diagnosis no family is prepared to receive.

Gavin’s story continues to inspire this mission: to raise awareness, offer support, and bring hope to families just like his.

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