Fresno Family Founded Foundation After Daughter's AVM
A Fresno family launched a non-profit to support AVM patients after their daughter's health crisis in 2025.
Updated on Sept. 30, 2026 in Stroke
After 10-year-old Lilly Heater collapsed at school on Oct. 16, 2025, from a brain Arteriovenous Malformation (AVM), her family established the Lilly's Journey organization. The group aims to fill a perceived gap in local support for families dealing with the condition.
Why it matters
The Heater family formed the foundation to provide resources they found lacking during Lilly's medical recovery. The group now seeks to partner with local institutions to improve the support network for pediatric patients in the region.
Lilly Heater spent 41 days in recovery at UCSF following her emergency brain surgery. Surgeons successfully addressed 90% of the internal bleeding during the nine-hour operation.
The players
Lilly Heater
She is the 10-year-old student who survived a significant brain AVM emergency in 2025.
Lilly's Journey
This is a non-profit organization founded by the Heater family to support local families navigating AVM diagnoses.
City of Fresno
The local municipal government officially proclaimed October 2026 as AVM Awareness Month to support the family's cause.
The details
Following her collapse, Heater was airlifted to UCSF for urgent care and spent over a month in the hospital before undergoing extensive physical rehabilitation. The City of Fresno officially recognized these efforts by designating October 2026 as AVM Awareness Month.
Timeline
Oct. 16, 2025: Lilly Heater suffered an AVM rupture at school.
October 2026: The City of Fresno designated AVM Awareness Month.
Oct. 17, 2026: Lilly's Journey will hold a public event.
Deeper Dive
The City of Fresno's AVM Awareness Month proclamation provides a formal framework for community advocacy similar to other national health-related awareness campaigns. This official designation serves to elevate the visibility of Arteriovenous Malformations within the local public health discourse.
Families affected by AVM diagnoses in the area can now access the resources and community support offered through the newly formed Lilly's Journey foundation. This organization aims to bolster rehabilitation programs at local facilities like Valley Children's Hospital.
The takeaway
Patients recovering from major neurological events often require long-term, specialized physical rehabilitation support. Establishing dedicated local organizations can help bridge gaps in care for families managing rare pediatric medical conditions.
What happens next
Lilly's Journey is scheduled to host a public event on Oct. 17, 2026, at the NorthPointe Community Church.
Further reading
Learn more about local support networks at the Stroke section.
Source note: This article includes information reported by KMPH.
