Update 1/9/2026
We have been contacted by John Hopkins in St.Petersburg Florida by a neurologist that is familiar with SCN8A!!! He is able to get Everett in January 26th! We need your help now more than ever and urgently!
✨Get the Answers He Desperately Needs✨
My name is Doris and I am the mother of a brave and handsome 10-year-old boy named Everett.
Everett is my entire world — and for his entire life, we have been searching for answers that never seem to come.
Everett has multiple genetic variants, including SCN8A, a gene that plays a critical role in how the brain sends electrical signals. Mutations in this gene can cause severe neurological conditions, including epilepsy, Autism, developmental delays, movement disorders, migraines, and episodes of sudden loss of consciousness and breathing.
In 2021, Whole Exome Sequencing (WES) revealed Everett carries the SCN8A c.4803C>A (p.Phe1601Leu) variant. When his WES was re-analyzed in 2025, the classification of this variant changed — leaving us with even more questions. This variant was inherited from me, and I also have a history of unexplained health issues. I tragically lost a child just shy of two months old to unknown causes but at this time it Is suspected that the complications with this gene variant may have played a part in his passing (we may never have official reasonings).
At this time, there are no research studies or treatment protocols for Everett’s specific SCN8A variant. However all the specialists, scientists and research facilities familiar with other variants of SCN8A are not local to us. So now we must travel to find the answers and hopefully treatment to not only help Everett but anyone out there like him.
Everett’s life has been a series of specialists, hospital stays, and heartbreak. He has challenges across nearly every system:
• Neurology
• Gastrointestinal
• ENT
• Endocrinology
• Rheumatology
• Behavioral health
• Level 2 Autism
• MTHFR mutation
• Optomology
• Pulmonary
• Scientists
• Human genetics
Despite countless blood tests, EEGs, EMGs, and hospitalizations, we are still living in a world of question marks.
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The Episodes That Terrify Us
Everett has sudden, unexplained episodes where he will go from perfectly fine to completely unresponsive within minutes.
His face changes — drooping slightly, becoming shiny and pale. A burning hot rash appears on his skin and migrates across his body. Then he is simply… gone.
No reflexes. No reaction to pain. Sometimes he stops breathing and must be given oxygen or manually bagged. At times he gasps for air. He doesn’t blink. He doesn’t respond — it looks as though he is brain-dead. When he finally comes back, he has no memory of the episode or the entire day leading up to it. He has noteabke cognitive deficients and has to relearn multiple things he had known prior…
The school refuses to have him in person as of October. Due to the uncertainty of these episodes and the concern for his safety. He now attends via zoom for 2 days a week, but is now struggling with withdrawing himself from social interactions of all kinds. The staff has been extrodinary at helping advocate for the best interest of everett. And eagerly await his return.
One recent episode nearly cost him his life. He had been sitting on his bed eating pizza and playing a game. Five minutes later, his sister found him half off the bed, pizza still in his mouth, gasping for air and unresponsive. If she hadn’t checked on him when she did, the outcome could have been devastating.
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Why We Are Asking for Help
Everett has been hospitalized repeatedly for suspected seizures, though his current neurologist believes he may have Functional Neurological Disorder (FND) with seizure-like episodes. His care is now being escalated urgently with referrals to:
• SCN8A Alliance (arizona)
• Undiagnosed Diseases Network (UDN)(harvard)
• Cleveland Clinic – Dr. Sumit Parikh (ohio)
• Mayo Clinic – Dr. Elaine Wirrell (Minnesota)
• Johns Hopkins / Kennedy Krieger Institute (Baltimore)
• Geneticist Dr. Hammer (SCN8A alliance)
• pediatric neurologist familiar with SCN8A location undecided)
These evaluations require extensive travel, lodging, time off work, uncovered medical costs, and long stays far from home. I am unable to work currently to care for Everett and attend appointments — and the financial burden is becoming overwhelming.
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From a Mother’s Heart
This little boy is my miracle. He fights battles no child should ever have to face. I will go to the ends of the earth to get him the answers and care he deserves — but I cannot do it alone anymore.
Your donation will help cover:
• Out-of-state specialist visits
• Hospital stays and testing
• Travel, lodging, and meals
• Lost income while I care for Everett full-time
If you cannot donate, please share Everett’s story. Awareness can save lives.
Also if you would like to donate to the SCN8A research to not only help Everett but the other children like him as well,
You can do so at:
Thank you from the bottom of our hearts for standing with our family in this fight.
Organizer
