Our Son Is a Fighter
Our son, Luke Zechariah Stevens is our miracle. After his first birthday, we noticed that Luke was not hitting certain milestones. He had not attempted to crawl or walk, and he was not speaking. We also noticed he was not using his left hand much, but we dismissed any concerns after his primary doctor shrugged it off stating Like was "right-hand dominant."
At 18 months, Luke had his first seizure. He turned blue and was jerking from all four limbs, so we went to the hospital.
After the hour ride to the hospital, Luke was hooked to an EEG machine and immediately went right into another seizure. After multiple tests, including an MRI, it was concluded that Luke has unilateral focal Polymicrogyria (PMG), left-sided monoplegia, and generalized epilepsy.
Over the next couple of years, there was a lot of medication adjustment, therapy, and doctor's appointments, which seemed beneficial. When the COVID-19 pandemic hit, we were informed that many of Luke's routine follow-ups were not a priority and were either postponed or rescheduled for a later date.
Luke began to have constant, repetitive grand mal (tonic-clonic) seizures with atonic seizures mixed in. Upon a suggestion from trusted colleagues, we took Luke to a different children's hospital where we spent nearly a week getting things under control. Luke still has atonic seizures and is trying to regulate appropriate medications. Though it is our last resort, pre-surgery conversations are underway.
Our son is a great-hearted, fun-loving warrior. He is so strong and encouraging. He is dedicated to making sure his disabilities and struggles don't overshadow who he is.
We know that most people, our family included, will never fully understand what we face in our daily lives and our concerns regarding the future. However, people can see that Luke is a fighter, and one to be admired.
Reviewed By: Sara Wyen