Auri – a real life super hero!
Auri is 10 years old this year (2026) and was diagnosed with GLUT1 in 2017 when she was 18 months old. She was born in Colorado, and we currently live in Arizona. If I had to choose two words to describe Auri, they would be Tenacious and Joyful. She is truly an inspiration to so many and brings such a light to this world.
Auri has the very classic symptoms of GLUT1 Deficiency – epilepsy, unusual eye/head movements during infancy, developmental delay, ataxia, speech impairment, movement disorder, etc. We witnessed her first seizure when she was just 6 weeks old, but we didn’t know it was a seizure at the time. She just went very still and stopped breathing.
Auri had many, many more of these “apneic episodes” and we consulted her pediatrician right away. The doctor gave us a very confident explanation that these were episodes of “acid reflux” and caused her to stop breathing. This information didn’t feel right to me. We started recording her on video every time this happened and the ambulance was called several times. The events would last up to two minutes, so every time a medical professional would actually see her, she was already back to her happy self and totally “fine.”
She spent a full week in the hospital when she was 6 months old after having these episodes over and over again in one day. She was still having these episodes in the ER, but by the time she was finally hooked up to an EEG, she had already been given a seizure rescue medicine and she didn’t have any more episodes the remainder of our time in the hospital that week. No evidence of seizures were found on the EEG, but I knew in my gut that’s what they were. Over the course of the next year, Auri had more episodes and they started changing and were very clearly seizures. She would stop breathing with each episode, but she also started to have more “classic” symptoms (mouth foaming, convulsions, etc.) This is when we knew for sure that they had been seizures all along.
When we found out she had GLUT1 at 18 months old, we got her started on the Ketogenic diet almost immediately, done in the hospital with a Keto team in the Neurology department. That was one of the worst weeks of my life because she got extreme keto flu and was so sick and miserable, BUT I am so glad I trusted the providers and stuck with it. Within 1 month of being on the diet, her seizures stopped. We were amazed.
The diet is not easy, especially when traveling, but it is absolutely worth it to control her seizures, and Auri has been amazingly compliant on the diet. We have been very open with her about GLUT1 from the very beginning and she fully understands that all bodies need different things to feel their best, and this is the best diet for her body.
We had many struggles with Ketoacidosis and found ourselves back in the ER about every 3 months. Finally, her neurologist said that in order to stay on the diet, we needed to get her a g-tube to keep her hydrated. Unknown to us at the time, this was the best gift we could’ve been given. She now stays hydrated and has all of her medicines given through her g-tube and it took so much stress off of us regarding her basic health.
Through all of this hardship, Auri has shown so much tenacity and joy. She brings a smile to everyone’s face, and she stays happy as long as she is moving, jumping, or dancing. She took Adaptive Ballet for 4 years, enjoys staying involved in Adaptive Sports including baseball, bowling, and kickball, she loves working with horses through an Adaptive Equine Therapy program, and she absolutely loves to swim. Being in the water is her happy place. She has been in PT, OT, and Speech therapy all along the way, and her therapists absolutely love her because she’s always happy during therapy and she NEVER gives up.
Auri was recently chosen to be a part of an amazing experience of becoming a real Super Hero for an evening—she had the opportunity to visit the Batcave and even got to ride in the Batmobile and the Bat-motorcycle! This was all thanks to the Colten Cowell Foundation (and Neeley’s Chronic Joy Foundation for nominating her).
The Batcave experience is an evening of pure FUN given to kids with disabilities and their family and friends. The evening started with a ride in Bruce Wayne’s limo for Auri, myself (mom), and her dad. Upon arriving at the Batcave, Auri’s friends and family greeted her as we entered the first room—Mr. Wayne’s private study.
The night unfolded into surprise after surprise for Auri and her friends. They were able to explore the Batcave filled with electronic and interactive gadgets and gizmos, see a full garage of amazing vehicles and finally experience riding in the Batmobile and Bat-motorcycle! The night was magical and fun for everyone involved. What is taught most of all at the Batcave is that the greatest gift of being a Super Hero is giving back to others, and the Colton Cowell Foundation very generously donated $3,000 to the GLUT1 Deficiency Foundation in Auri’s name, and we couldn’t be more grateful.
We are so fortunate to be part of the GLUT1 family. All of YOU have been an enormous support to my family, and when I’m having an especially hard day navigating this disease, I always rest assured knowing that I am not alone in this. We love you all.
