Intractable: adjective; (1) not easily relieved or cured, i.e., intractable seizures; (2) not easily manipulated or shaped, i.e., intractable hope
Hope: noun; a feeling of expectation and a desire for a certain thing to happen
This is a story about hope. Relentless intractable hope. It’s about never giving up. About fighting through feelings of helplessness. About navigating through a virtually impossible healthcare system. About pounding on closed doors. About a never ending quest for information regarding the mysteries of the brain. About the life changing impact of a chronic condition. About accepting help from friends, from family, from neighbors, from strangers. About sharing a story so others can know and can chose to help move the conversation about epilepsy forward and into view. It’s about raising funds for research to help cure epilepsy. It’s about using this experience as a platform to help others who don’t have access to the resources that are the foundation for what has been possible here.
But mostly this is about a pretty cool kid whose life changed unexpectedly and overnight from a life full of sports to one filled with doctors appointments, hospital stays, blood draws, EEGs, MRIs, therapy, and now a daily regimen of powerful drugs so that he can live like he once did.
Many of you know Cormac’s story and know that there is not a quick or easy way to share all that has happened over the last 1.5 years. For all of us, the world is a different place than it was back then. As we together search for normalcy during an upside down time, please take a moment to meet Cormac Moore, age 11, courageous and tough, resilience personified. On April 17th at 6:52 am his life and our lives changed when he had a 4 minute grand mal seizure (aka tonic clonic seizure) as we were about to leave for school. The horror of that moment will never disappear. Four minutes will never seem as long as they did that morning.
The seizures and potential for seizures continued to terrorize and dominate our lives as we sought to get the powerful seizures under control during those first few months. Cormac went from a non-stop active, sports obsessed kid to essentially bed ridden/house bound for a majority of the summer of 2019. Just two months after his first seizure, he had had more than 10 lengthy and devastating grand mal seizures that could not be controlled by medicine. He became all too familiar with ambulance rides, hospitals, blood draws and IVs. He was diagnosed with generalized primary intractable epilepsy.
The medicines were titrated up but the seizures would not stop. By July 2019, Cormac had been reduced to laying on the couch, in the dark cool living room, neither eating nor drinking, unable to handle sound or smell. We were admitted to Wake Forest University Baptist Hospital on an urgent basis as we started the next leg of this journey. Cormac’s medicine was making him sick so the physicians at Wake made some big changes. Cormac started on the first FDA approved CBD oil and another drug. We were optimistic. We also learned that Cormac’s seizures were likely due to two mutations on genes connected with epilepsy.
But the seizures, although weakened, still did not stop. Another drug was added. This did not stop Cormac. Once he regained his strength, he was back to playing organized sports, running around with his friends and going back to school, now accompanied full time by a second set of eyes in the event something happened. We were learning to deal with the anxiety of regular medications multiple times per day, the difficult side effects of medication, the challenges of academics with a brain fogged by medication, and the unknown ahead.
The seizures changed from violent grand mal seizures to weaker but no less disturbing seizure episodes. We had several more hospital stays; we were privileged to be seen at Mayo Clinic in Rochester; we tinkered with the now three anti-seizure medications that he was on; we added vitamins; we were diagnosed with ADHD; we added more medicine; we saw more doctors; we continued to be seen at Wake; we went back to Mayo. Like the seizures, our hope was intractable. We held on to the belief that we could find seizure freedom.
But starting in March 2020, the seizures started occurring every 9-11 days, consistently. By August, it was a clear we needed to be admitted to the hospital in order to make some drastic changes. We removed one of the three seizure medications and added a different medication. Every time medications are changed, it’s like experiencing the horror of April 17th all over. The body and brain are unforgiving when you take away something they depend on, even if it is a medicine that doesn’t really work. The first few weeks were difficult with multiple violent grand mal seizures. Then something happened. The twinkle in Cormac’s eyes seemed to return. The aggressive anger that would come out of no where did not appear quite so often. He was more rational – we were able to add new foods with lower carbs, get him to bed earlier. We added different vitamins. His weight returned to normal. His energy levels increased. As of the date I write this, Cormac often seems the closest to pre-seizure Cormac since this started.
There is so much more to the story than I can write here. In addition to Cormac, there are countless heroes in this tale, notably Cormac’s siblings Owen, Agnes and Eamon whose lives have also changed. They have seen more scariness in their short lives than I ever saw until now. Their lives have changed and they have been selfless and empathetic throughout this. Of course, it’s not perfect and I can feel their resentment and frustration too as they fight for attention and the life they once knew. Kudos to Ruth, Cormac’s constant companion, who sat through 4th grade and now 5th grade making sure that Cormac is safe in his school. Ruth probably never imagined what this job would entail when she started with us as simply our afternoon nanny 8 months before Cormac’s seizures started. Quiet and observant with strength beyond measure, Ruth is a treasured part of our family and will always be. She is special as well because she knew Cormac before seizure onset. Cormac’s tennis coach also knew Cormac before his seizures began. Never has there been a greater believer in Cormac than this coach. As a high schooler, I was the beneficiary of a special coach who touched and changed my life, and now Cormac is a similar beneficiary of an amazing coach. There are too many other heroes to call out here lest this turn into a novel but I know we are so very lucky because the list is so very long.
The story is not over but this year, we entered a new chapter. This year we celebrated one year of seizure freedom. It’s a success with footnotes, with caveats, with hesitation. Cormac’s tough exterior hides the challenges of living with a chronic health condition that could come roaring back without notice. His desire to be like everyone else, to blend in, to be the Cormac he once was, masks all that he battles.
On a recent podcast, the guest described epilepsy as a cruel condition. There are no truer words. Epilepsy wreaks a peculiar kind of havoc. The foundation on which we all rely to go about our lives – the notion that we are in control of ourselves and our body – is thrown out the window with epilepsy. Patient and caregiver are thrust into a world that is topsy-turvy, unstable, and could change at any time. One minute standing, the next on the floor. The brain taking over the body. It’s hard to understand until you witness it – the body subject to a brain on fire. And once the brain resets, the body is back, largely to normal, subject to any injury sustained during the seizure. Everything looks fine except it is not.
As strong as Cormac looks, nothing is the same. Whether the medication, the seizures or just biology and genetics are to blame, everything is harder for Cormac now. School struggles that bordered on average are now much greater. Behavior challenges that remained within age appropriateness are now borderline. Speech and language issues are amplified, attention issues magnified, coordination and agility negatively impacted. All of this is set against the back drop of a medical issue that is not fully understood. The more we learn about seizures and epilepsy, the clearer it becomes that this is a whole brain issue – the seizures as a symptom of something more.
We support CURE Epilepsy because 20 years ago, we would not have known that Cormac’s epilepsy is likely the result of a genetic mutation. It is only because of ongoing support for epilepsy research that knowledge of genetic epilepsy has advanced so significantly. Because we know about the genetic mutations, physicians know what drugs Cormac needs to avoid and what drugs are worthwhile to try. Continuing to support research for genetic epilepsy means that more options will be available to Cormac as he grows up.