"Our Brave Warriors"

Listen to the beautiful, original song that Terry Glynn wrote for his grandson Thomas and the other SCN8A warriors.

SCN8A warrior Thomas, and his grandfather Terry.

My name is Adeline.
"I am a determined and willful little girl who was diagnosed with epilepsy when I was 5 months old. My SCN8A mutation has led to hospitalizations, difficult-to-control seizures, a disruption in my developmental milestones (smiling, laughing, safely swallowing, motor skills) and has caused behavioral challenges. I am in Kindergarten now and progressing with only mild delays, but I must overcome big obstacles everyday. I am #scn8astrong!"

My name is Brandon.
"Brandon is a 5th grader who loves school, the Avengers, Seattle Seahawks, and riding quads. Thanks to sodium channel blockers and the keto diet, he has been blessed with seizure freedom for over five years. Despite many hospitalizations, doctor visits, and developmental challenges, he always has a smile on his face and is everybody’s friend!"

My name is Jacob.
"When Jacob was 7 months old, he did a weird thing with his eyes. He did it a couple of times and then stopped. We went to Primary Children's the next day and Jacob was admitted for Infantile Spasms. Jacob went through many medications and none of them have stopped his seizures. We were able to do an Epilepsy genetic study a few years ago, and finally got results that Jake has a chromosome mutation called SCN8A. It is a very rare form of Epilepsy. At the time we found out our results, there was only 1 other family in Utah and only 150 total world wide. Jake suffers from 10 to 15 seizures a day. Jake is non-verbal, immobile, and requires 24 hour care, but he is our superhero. Jake attends elementary school and loves being around kids."

My name is Zeke.
"While Zeke has never achieved seizure freedom and is frequently in the hospital, he never allows SCN8A to bring him down. He as a smile that will brighten anyone's day and a laugh that will bring you to tears."

My name is Collin.
"Collin will be 3 in March and lives up to the name CUTE. Everyone he meets or sees absolutely loves him and his spunky personality. He may have gone through a lot since he was 8 months old but you would never guess it by looking at him."

My name is Bruno.
"Bruno's personality was one that could light up a room. He loved to smile and laugh, and, more importantly, he loved to see other people smile and laugh. He was a charmer, potential heartbreaker, polite, generous, contented.

​On July 1st, 2017 Bruno passed away in his sleep, six weeks shy of his seventh birthday.

I sometimes feel that maybe he had already accomplished a lifetime's worth in almost all categories:

- Love and happiness given
- Love and happiness received
- Horrible experiences made

So that he maybe felt that his job was done and he could move on." ​

My name is Will.
"Will brought his family and friends so much joy through his smiles, laughter, and just by being his sweet self.  He passed away at the age of 7 due to SUDEP (Sudden Unexpected Death in Epilepsy).  We miss him everyday and hope that other children living with SCN8A will be able to experience better seizure control through ongoing research efforts."

My name is Kiya.
"Kiya will be 4 years old in January... In her life she has gone through so much! No child should be used to going to the hospital. Kiya is so strong and loving! Everyone falls in love with her! She will give you hugs and kisses! No matter what she goes through she still says I love you mom and gives me kisses and hugs!"

My name is Max.
"My name is Max and I am the sheer definition of a warrior. Even though I am frequently in and out of hospitals due to respiratory and seizure issues, I come back even stronger than before. I love hanging out with my little brother, feeling the wind on my face, and I confront all the challenges life has thrown at me head on."

My name is Elowen.
"Elowen is a little girl as unique as her name.  She loves books, animals, and snacks.  Her first year of life was challenging, but she has overcome many obstacles and is doing fantastic.  Follow her journey here: Elowen's SCN8A"

My name is Connor.
"Connor aka Connorman is a real life superhero battling the villain, SCN8A Epilepsy everyday. Overcoming weekly uncontrolled seizures and being in a wheelchair is no small feat, but our superhero faces these challenges with a fearless attitude and the bravest (and cutest) smile!"

My name is Megan.
"Megan had her first seizure at 6 months old.  After several years of seizures and developmental delays, we were able to find seizure control with medication.  All along as Megan worked hard with various therapies, we fought hard to keep her seizure-free, and kept searching for answers.  At the age of 12 years old, Megan was diagnosed with SCN8A.  Now at 14 years old, Megan has excellent seizure control with medication and continues to improve daily on her developmental delays.  If it wasn't for the research funded by The Cute Syndrome Foundation, we may still be looking for answers for our little girl."

My name is Jonah.
"Jonah loves to eat, bounce, car rides, watching Daniel Tiger and playing with his puzzles. He most dislikes when his TV shows finish, having his face washed, and leaving the park. He is a spirited child and enjoys wrestling with his dad and big brother. He looks forward to his bedtime routine with his mom, brushing his teeth, singing his favorite songs, and reading his favorite books."