Brecken’s Story


Brecken came into this world November 5th, 2018 and was originally admitted to the NICU due to low blood sugars. What should’ve been a short easy stay shortly turned into every parents worst nightmare on his second day of life. Brecken started having seizures and the EEG showed it was hundreds of seizures a day with abnormal brain activity even when he wasn’t having a seizure. The hardest part was nobody knew what was causing them. Brecken stopped breathing after a seizure on about the 3rd day of life but the doctors were able to get him breathing again after about one minute. Brecken spent 6 weeks in two different NICU’s. He was diagnosed KCNQ2 Encephalopathy on December 12th, 2018. Brecken would not wake up enough to eat orally so they placed a gtube December 13th. They finally found a medication to control his seizures and he was finally able to come home December 18th and I was finally able to feel like a mother. Not knowing what would happen at home I was very scared, but Brecken has done amazing since being home. He started to eat orally after only two weeks of being home and has only gone up from there. He is the most full of life and happy baby I have ever seen. You couldn’t even tell just by looking at him what he had gone through the first 6 weeks of life.

I appreciate one of our NICU doctors Stevie Rowe more than I will ever be able to express. She took it upon herself to get emotionally invested in Brecken and she always made sure i was holding up okay. Her kindness drove me to be strong for my sweet baby and I will never forget the impact she had on my life. My life has changed drastically from receiving the diagnosis, mostly in a good way. I’ve learned to appreciate the small things, because to us, they’re very big things. I’ve learned to appreciate life a lot more. And I’ve learned that kcnq2 kids are so strong. We plan to stay engaged in the KCNQ2 community by advocating for these kids and spreading the word about it to doctors, family, friends, and our community. I had never heard of KCNQ2 before getting my sons diagnosis but I will do my part in making sure I can help people understand it.