Languages
To know Lane, is to love him. He doesn’t meet a stranger and spreads joy wherever he goes. Born in November 2022, Lane met all of his early milestones and enjoyed a healthy first year, rarely visiting the doctor except for routine checkups. Around 14 months old, however, we began noticing a decline in his desire to speak.
In April 2024, after becoming ill at daycare, Lane began experiencing unusual movements. Based on our research, we suspected infantile spasms—a severe form of epilepsy that requires urgent medical attention. Online resources stressed the importance of going to a pediatric Level 4 epilepsy center. Since none existed in Santa Barbara, we made the decision to drive to Los Angeles. The following morning, we entered the ER—and our world changed forever.
By May 2024, Lane had been officially diagnosed with infantile spasms and atonic seizures. He did not respond to steroid treatments or other medications, and by June, he received a diagnosis of Lennox-Gastaut Syndrome (LGS). Thanks to his exceptional neurologist, Dr. Hussain at UCLA, we began navigating the complex road ahead.
In August 2024, Lane underwent his first brain surgery—a corpus callosotomy performed by the very talented Dr. Fallah at UCLA. The goal was to lateralize his seizure activity to the left hemisphere, potentially allowing for a hemispherectomy to remove the affected side and address suspected cortical dysplasia. While the surgery initially stopped his atonic seizures, seizure activity continued. Lane could no longer attend daycare, and our family had to stop working to focus on his care.
In December 2024, Lane began the medical ketogenic diet through a hospital admission. This significantly improved his cognition and awareness, though seizures persisted. In April 2025, he underwent a left functional hemispherectomy. Recovery was complicated by parainfluenza and meningitis, but Lane’s strength and spirit shone through.
Following surgery, Lane transferred to inpatient rehabilitation at CHLA for eight weeks. When he entered rehab, he had lost use of his right side and could only speak five words. By discharge, he could walk with assistance, had regained some awareness of his right arm, and could say 37 words. Staff nicknamed him “The Mayor of Rehab” for his outgoing personality and “Super Lane” for his incredible determination. He made lifelong friends there, both patients and therapist’s.
Although his daytime seizures stopped, Lane began experiencing nighttime spasms. Concern arose that some connections remained in the left hemisphere, so in July 2025, he underwent a left anatomical hemispherectomy. He returned to rehab after overcoming a fever for three weeks post surgery. Currently, Lane is still experiencing some activity during sleep, but it is early in recovery, and we remain hopeful.
By the time he is 3, Lane will have endured three epilepsy brain surgeries—yet he continues to inspire us every day with his resilience, determination, and joy. His golden birthday, November 3, 2025, will be a celebration of courage. One we hope to celebrate at Epilepsy Day at Disneyland in November. Lane has never been and after everything this year, there is a lot to celebrate.
What We’ve Learned:
- Build Your Team – We call ours “Team Lane.” Every doctor, nurse, therapist, and supporter plays a vital role, and every one of them must carry hope.
- Never Lose Hope – Even small “glimmers” of progress are worth holding onto.
- Advocate Relentlessly – Your voice as a parent matters. Questions and observations can lead to meaningful changes for your child and for other epilepsy children in the future.
- Find Your Community – The epilepsy and medical parent community is a lifeline. Mom has a group chat with five epilepsy moms that she can text at any hour of the day, called “cheers and tears” because you never know what epilepsy day it is going to be. Whether through foundations, online groups, social media or support networks, connecting with other parents will help you through the most difficult days and help you navigate a system that is not always easy to.
Lane’s story is still unfolding, but one truth remains: he is a real-life superhero, who is so loved, and never stops smiling.
-As told by his mother, Courtney 💜
