Nora’s Battle Against Epilepsy

Recent update: It's been one year since we realized Nora's seizures had changed. 12 days in the hospital, countless tests, countless doctor appointments, 3 surgical conferences, 4,000 seizures and counting.

It has been the longest year of our lives, but it also seemed to go quickly. Each day is long, waiting for the next seizure, waiting for the seizures to slow down at night so we can go to sleep, but each day blurring together and passing by.

In 10 days, we are hopeful that our lives change again. Nora will undergo another brain surgery to hopefully get her to seizure freedom with hopefully little to no deficits.

On January 9th, please consider wearing your Nora's Warriors shirts or wearing purple to show Nora the support going into what is hopefully her last surgery.

Thank you for all of the support and prayers this year. We couldn't have gotten through this alone.

Original Story:

Nora was diagnosed with epilepsy in May of 2020. From her diagnosis until December 30, 2021, we are aware of her having 16 seizures. On December 31st, everything changed. Nora started experiencing multiple seizures during the day and even more while she slept. We spent the first few days of the new year at Children's Minnesota Hospital in St. Paul to try and figure out what was causing the increase in seizures. While in the hospital, we learned that she has cortical dysplasia, which is the cause of the seizures. Cortical dysplasia is a deformity in the brain when one of the six layers of the brain is not fully pushed out during the brain development. This is the most common cause of epilepsy. We were hopeful that medication would control the seizures, but brain surgery may be necessary. Over the course of the next few months, she had numerous medication increases and changes with little to no effect on the amount of seizures she experiences each day. Since January 8, 2022, she has experienced over 2,000 seizures.

In April, an overnight stay in the hospital confirmed that the medication is doing little to control her seizures and surgery was recommended as the next step. In May, Nora and Tina traveled to The Mayo Clinic in Rochester, MN several times for presurgical testing. In order for Nora to be seen at Mayo, they had to switch her insurance coverage, so they had to meet two deductibles and out of pocket maximums this year on top of the other expenses involved with hospital stays and travel. Not only will this help with expenses related to travel, food and medical expenses, but Nora will see the support team she has rallying behind her as she heads into the possibility of brain surgery.

A message from Tina and Ryan and family -The outpouring of support is truly remarkable and we cannot fully express our gratitude. Thank you from the bottom of our hearts! We are blessed to have such a strong support group walking through this journey with us and Nora. We are forever thankful for all of YOU in our lives!