Aaron’s Story

​Aaron was born January 2014. He had a healthy pregnancy, labor, and delivery. At 7 weeks of age he started having seizures. We (Mom & Dad) drove him to Ft Worth, Texas to be seen at Cook Children’s Medical Center. He was admitted for two nights, and released with a clean bill of health. The neurologist at the time said he had benign infantile convulsions that he could possibly grow out of over time. Over the next year, Aaron exhibited gross motor delays. He began physical therapy at age one and started crawling for the first time at 13 months.

Aaron never had another seizure until 17 months old. It happened on a road trip from Texas to Iowa, where we’re both originally from. Aaron had fallen asleep in the car seat for about an hour while we were driving when he suddenly woke up, started a tonic-clonic seizure, and stopped breathing. His eyes and lips turned blue. Dad attended him while Mom “cautiously” drove fast down a small-town backroad in Auburn, Nebraska to get to the ER. We will never forget that day. The day we thought we lost our son. He looked lifeless. What we do remember is the Lord’s peace that filled our car in this very helpless moment. We remember the Lord asking in a very loving way: “Whose is Aaron, mine or yours?” We also understood something that will never make sense in any logical way—that if Aaron had died that day, it would have been in God’s goodness. It was a perspective of peace that we couldn’t comprehend and more love than we had ever known possible. We were also starkly reminded that Aaron was God’s first and ours second. That is the day we realized we had no control but instead chose to surrender. Surrendering is what has lead us ultimately to freedom. Freedom to live life without anxiety but instead replaced it with peace. God knows Aaron’s needs and has allowed us to be a part of His plan for Aaron’s life.

From that day on, the seizures and developmental delays continued and there were more tests (MRI, EEG, Abdominal ultrasounds, etc.) We are a military family from the United States that moves around every 2-3 years. Shortly after we moved to Phoenix, Arizona, our neurologist at Phoenix Children’s Hospital referred us to genetic testing because no one could figure out why his body was having seizures with no known triggers. By the time Aaron was 2 years old, we started medicine for the seizures and added speech therapy for his delay. During our next move from Arizona to South Carolina, we stopped in Iowa to visit family. During that stay, Mom finally received the phone call about Aaron’s genetic testing results from the geneticist. Dad was away during this time for military training. This was the result:

June 2016 Diagnostic Testing/ Sequence Analysis of 1148 Genes/ EpiXpanded Panel found only one positive hit on the panel. Very straight forward result. Variant on panel saw a change. KCNA2 gene. It is involved in epilepsy, seizures, developmental delay and ataxia. Neither parent has this variant or change. Randomly happened in Aaron. Happened sporadically. One change in his KCNA2 gene. It is dominant. K- potassium cn- channel. Gene is expressed in the brain. Major symptom is seizures. Knowledge of genes like this is relatively new. Aaron has gain of function.

Immediately after hearing the medical reason why Aaron had seizures, developmental delays, and ataxia Aaron’s Grandma watched Aaron and newborn baby sister while Mom went outside by herself to process what this rare, severe epilepsy was, and to cry and talk with the Lord. After an hour, Grandma brought Aaron to Mom and said; “Look, he is the same boy you have always known, God has a plan for him and you all.” Grandma was right, Mom stood up and walked to Aaron, hugging him with his big smile and contagious laugh, knowing there was so much to observe, learn, and trust the Lord with day-to-day. At the time there were only 8 of these KCNA2 cases known worldwide.
We arrived in South Carolina in the summer of 2016. Aaron received care at the Medical University of South Carolina in Charleston. At this point, Aaron had only ever had tonic-clonic seizures, and they looked similar every time from 7 weeks old to age 5. Well then things changed. We didn’t know they could because we really had no more information than what the genetic testing showed. We only knew what we knew at the time. Dad deployed in October and then in November Aaron, who was 4 years old started having what we now know are absence seizures. They would last 10-20 seconds and would constantly happen throughout day. It was difficult. God provided, and gave comfort and practical help through people in Mom’s military community and church family. At times, Mom really felt like Jesus was just holding her and Aaron’s hand. Dad returned from deployment and accompanied Mom and Aaron for a 24-hour EEG to catch the absence seizures. Then we moved again from South Carolina to San Antonio, Texas in March 2019.

Upon arriving, Aaron had more tests, met again with new a neurologist, developmental pediatrician, and geneticist at Brooks Army Medical Center (BAMC), and he changed medicines again. He was also evaluated by a behavioral psychologist who gave him a diagnosis of mild intellectual disability (provisional.) We were not able to get his absence seizures under control with one medicine, so we added a second medicine that has since successfully controlled the absence seizures. The tonic-clonic seizures have never been controlled on medicine.

Aaron has a younger sister and a younger brother who adore him. He is a very strong-willed boy with the sweetest heart. He expresses his love with physical touch (lots of hugs and piggy back rides) and words of affirmation (the best compliment-giver.) He loves anything water-related, especially swimming with his swim coach to help develop his low muscle tone as well as his ataxia issues. His ataxia varies day-to-day. Some days he wants to jump, swim, and water ski and other days it is too challenging for his muscles. He also enjoys hippotherapy, where he gets to ride a horse while doing physical and speech therapy. He continues to receive sensory integrated speech, physical, and occupational therapy 2-3 times a week. Specifically, his OT focuses on craniosacral and reflex therapy. Aaron absolutely loves amusement parks and their rides, especially roller coasters. Aaron has done both schooling at home and at school. Currently he attends a caring and supportive school that follows his Individual Education Plan.

As a military family moving around, we have experienced several different doctors across America, all trying to help understand Aaron and his rare, severe form of epilepsy. There is just not enough research as it was only discovered in 2015. When people become more familiar with KCNA2, naturally more understanding will come to include research, with the hope of both conventional and functional medicine that can help control the seizures, ataxia issues, improve cognitive functioning overall, and as always find a cure. We have seen God move in mighty ways in Aaron’s life. Currently he is 7 years old. We trust the Lord will use Aaron’s story to show His goodness, provision through research, love, connection, and His care for all people of special needs. After all, Aaron is created in the image of God and so are you!

“So God created mankind in His own image; in the image of God He created them; male and female He created them.” Genesis 1:26