My Son's Story: Sharing Strength and Hope

On October 26, 2023, my five-year-old son had his first complex partial seizure. He had just fallen asleep, and about 20 minutes later, I heard him vomiting. As I turned on the light to help him, I saw that his eyes were open and staring off to the side. He started turning blue, so I called 911. The seizure lasted about 15 minutes before rescue medication was given. At the hospital, he was diagnosed with epilepsy.

I had some idea that this diagnosis might come, as my son has a genetic condition called Koolen-de-Vries syndrome. But nothing could prepare me for what followed. In the first six months, we had 14 calls to 911. His second-to-last seizure lasted off and on for four hours, with brief breaks in between. It took eight rounds of medication to finally stop it. After a lot of trial and error, we found a medication that has helped. His last seizure was on May 3, 2024.

Even though the medication has brought some relief, I still stay up late, watching him sleep. All of his seizures happened after he fell asleep and were prolonged, often silent, so I am terrified I might not wake up if one happens. The fear still lingers, but I am so grateful that we’ve finally found something that works for him. I know firsthand how scary epilepsy can be, but I want others to know that you’re not alone. Don’t hesitate to reach out for support from others who truly understand.

This journey is not just about managing my son’s seizures—it's about healing from the trauma and finding connection with others who are going through similar struggles. Together, we can find strength and hope.