Avleen Athwal’s FIRES Epilepsy Foundation
Lighting the Path to Understand FIRES Epilepsy
FIRES, or Febrile Infection-Related Epilepsy Syndrome, is a rare, severe, and sudden-onset epileptic encephalopathy in previously healthy children and young adults, triggered by a febrile illness. FIRES is a form of New-Onset Refractory Status Epilepticus (NORSE) where the severe seizure activity follows a feverish illness.
It involves continuous, difficult-to-control seizures (refractory status epilepticus) that often lead to significant neurological and cognitive impairment. While the cause is unknown, suspected variables include infection, genetics, or an autoimmune reaction. Treatment focuses on controlling the seizures and managing symptoms, but the outcome is often poor, with high rates of mortality and long-term disability
Our foundation aims to raise money to implement a two-eyed approach in our medical systems with a goal of increasing research for FIRES epilepsy while contributing money to finding a cure. The two-eyed approach is a way to combine western knowledge with holistic and traditional knowledge to bridge the gap in our modern medical systems.
In late November, 2024, Avleen caught a fever. For the next few days, Avi faced high fevers and was on bed rest. The fever had subdued but on Dec 02, she woke up with her first seizure. The doctors were unable to stop seizures but simply control them. She was placed in an induced coma, and was on several steroids, aiming to stop the seizures. Her case was so severe that she was given 10x the dose any patient at VGH has ever recieved. Such harsh steroids, combined with the tradeoff’s of ongoing seizures, led to Avi developing pneumonia and catching sepsis.
Multiple of Avi’s organs failed, and she was placed on ECMO which led to internal bleeding. As her condition worsen, Avi caught jaundice and fibrosis in her lungs. For 6 weeks, Avi fought bravely, longer than the doctor’s expectations. That is the Avleen we know- a warrior who fought till every last breath. On Jan 17th, 2025 at 11:48 PM at the of age 17, Avi lost her battle to FIRE and passed away after going into cardiac arrest. In honour of Avi and her legacy, we hope to increase research on FIRE epilepsy so that future patients have a greater chance of survival.
Avleen Athwal: Oct 12th, 2007- Jan 17th, 2025
Avleen’s Story
What is Avleen’s Flame of Hope?
Avleen’s Flame of Hope is more than just a campaign — it is a living legacy. It focuses on sharing the powerful stories of patients who have survived, as well as the heartfelt experiences of families who have watched their loved ones battle or lose their lives to FIRES. Each story represents courage, resilience, and the enduring spirit of those affected. The Flame stands as a symbol of Avi’s light — one that continues to shine beyond her own journey, illuminating the path for others. By passing the torch to those before and after her, Avleen inspires a collective commitment to raising awareness, fostering compassion, and driving proactive measures to combat this disease. Her flame reminds us that while one life may be lost, its light can ignite hope, advocacy, and change for generations to come.
How Can You Get Involved?
Education and knowledge happens within the context of a larger community. Our foundation provides the opportunity to get involved in several ways such as being part of our executive team or volunteer team – where you help support with events, host information sessions within our community and manage our social media. Local businesses also have the opportunity to partner with us in either organizing or sponsoring an event that is focused on raising money for FIRE while giving back to the community. You can also share your own story with us as we raise Avi’s flame of hope. If you are interested, please fill out the contact form on our site.
“Research is to see what everybody else has seen, and to think what nobody else has thought.”
— Albert Szent-Gyorgyi
Contact
Feel free to contact us with any questions or inquiries.
Email
aafef@info.org
Instagram
avleenathwalsfirefdn