In July of 2021, Owen was admitted to Children's National Hospital (CNH) for over 100 days after having a mild cold that triggered an autoimmune attack to his brain. Thanks to Dr. Elizabeth Wells's expertise around autoimmune encephalitis, Owen was quickly diagnosed with Febrile Infection-Related Epilepsy Syndrome (FIRES) and the team began life saving measures to stop Owen's brain from continuing in "status". Owen sustained hundreds of seizures, was intubated and placed in a coma for over a month and spent subsequent months recovering from his acute onset in the PICU and the Neurology acute care unit of Children's National Hospital.

There are still a lot of unknowns for Owen, but his outcome so far is a rarity of this rare diagnosis. FIRES attacks previously healthy children after a mild infection and outcomes vary but are catastrophic for many and leave most severely disabled, battling a lifetime of refractory status epilepticus. 

The vision for the FIRES research is to accelerate clinical research and advance care through a three-phase process. Phase 1 with a $15,000 philanthropic need is to formalize the multidisciplinary team of FIRES experts at Children’s National so they can collaborate more effectively. We have accomplished Phase 1 and are working to achieve Phase 2 goal this year. Phase 2 has a funding need of $100,000 with the goal to collaborate with other hospitals to conduct more research and identify standard practices for care. This is critical given the complexity of the condition and limited number of cases. Phase 3 with a funding need of $2.5 million is to conduct the first multi-site clinical trial for FIRES. Our long-term goal is to lead a clinical trial to evaluate the role of molecular profiling to determine individualized treatment plans for FIRES patients.

Help us create a fund to further the research and collaboration between medical institutions to ensure better outcomes for future FIRES families and their children. As well, help support those hospitals who have never seen nor treated a FIRES patient ensure they have the reach to the right experts at CNH and resources to prevent the devastation that comes with not acting fast enough when FIRES acute onsets occur.

For corporate matching gift individual should submit their matching gift form in accordance with companies' internal processes/policies with special instructions to note "Fight FIRES for Owen" on the form to ensure that the matching portion is applied to the FIRES fund. Individual should send a copy of the completed form to us via matchinggiftinfo@childrensnational.org.

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