Loudoun Times Feature: The Cancelleri Family’s Story

“People do not know about Alexander Disease until it affects them.”

Meet the Cancelleri family from Leesburg, Virginia. When their son Levi was just over a month old, he began having seizures. After days of testing and a terrifying wait for genetic results, they received the diagnosis: Alexander Disease.

Doctors told them Levi would not live past age 2 — that he would never walk, speak, or read.

But Levi is now 4 years old. His dad Tom describes him as “the happiest child” with “a magnetic personality” that his entire school loves. While AxD presents daily challenges — limited speech, difficulty keeping up with classmates, and the constant threat of seizures — the Cancelleri family refuses to give up.

They found Dr. Amy Waldman at Children’s Hospital of Philadelphia, and her expertise gave them the hope they needed. Tom shares that research into GFAP — the protein at the heart of AxD — may also unlock insights into Alzheimer’s and other neurodegenerative conditions, making awareness for our rare community even more far-reaching.

Read the full story from the Loudoun Times-Mirror here.