Our Story

In 2022, our son Beckett was a happy, healthy toddler when a common viral illness changed our lives forever. At just 2 years old, he was diagnosed with Acute Necrotizing Encephalopathy (ANE), an incredibly rare neurological disease that can cause rapid brain injury following common viral infections.

Within hours, Beckett lost the ability to walk, talk, and eat independently. Through months of intensive rehabilitation, he courageously relearned those skills and continues to amaze us with his resilience.

Genetic testing later revealed that Beckett carries a mutation in the RANBP2 gene, one of the most common known genetic causes associated with recurrent ANE. This means that viruses many children recover from with little more than rest can trigger life-threatening inflammation in Beckett’s brain. Today, there is no cure and no proven way to prevent future episodes.

In February 2025, after contracting Influenza A, Beckett experienced another severe ANE episode that required intensive care and months of rehabilitation. He continues to receive monthly IVIG treatments while living with the uncertainty that even a common virus can become a medical emergency.

Watching our son face these challenges inspired us to create Beckett’s Beehive, to turn our family’s journey into hope for others.

Why the Beehive?

The inspiration behind our name begins with Beckett himself.

The English origin of the name Beckett means “beehive,” and we couldn’t imagine a more fitting symbol for our mission.

A beehive represents the power of community. Every bee has a role, and together they accomplish extraordinary things.

Our Mission

Beckett’s Beehive is dedicated to raising awareness of ANE, funding groundbreaking research at Ann & Robert H. Lurie Children’s Hospital of Chicago, and bringing together a community committed to finding better treatments and one day, a cure.