Help Nate Overcome Epilepsy

Thank you for taking the time to read the story of our dear friends. Nate's journey is one of grace, grit, hope, and faith. Any help you can give them is so appreciated. If you are unable to help them financially, please continue to keep them in your prayers.

The first time we heard our pastor say, “There’s no pain like kid pain,” we felt it to the core of our being. While we know we are not alone in the struggles parents have with their kids, ours, at times, has seemed intense and never-ending. But here we are, and at this very moment, we find ourselves filled with gratitude and hope. We are thankful for the unwavering support we have received from family, friends, church folk, fellow employees, employers, healthcare providers, tons of followers, dogs and even a cat or two. In reflecting on your love and support, we are reminded of Psalm 27:13 “I would have despaired had I not believed that I would see the goodness of the Lord in the land of the living.” Part of that goodness we have seen is from everyone who has come alongside us on this journey.

For those of you who are unaware, our son Nate’s health battle began at age 6 when he suddenly had an hour-long seizure. Multiple tests at our local hospital revealed little, and we were sent home with lots of questions and time to unknowingly allow an infection in Nate’s brain to grow. After a few weeks, another lengthy seizure returned, and imaging revealed a large abscess in the right frontal lobe. After an emergency surgery to drain the abscess and a 6-week round of IV antibiotics, you wouldn’t even know that Nate ever had anything wrong. He was physically and cognitively fine, ready to wield a lightsaber and go back to the world of just being a “normal” kid. He was our miracle, and we praised God for the victory.

But we are not the author of Nate’s story. God is, and He had other plans. After a quiet 9 years, at least medically speaking because nothing is ever quiet with Nate, Nate suddenly had 2 seizures with in a period of days. The same neurological team Nate saw at age 6, re-entered his life. We were devastated. Nate was told he had epilepsy, and medication was prescribed. We accepted this diagnosis and thought that this one pill he took just once a day would be all he needed. And so it was for the rest of his high school years.

Two days before Thanksgiving of Nate’s freshman year, we got a panicked phone call from his roommate stating that Nate was having a seizure. “How can this be?” we thought. He’s on meds, this shouldn’t be happening. And five days later, another seizure returned. We were now scrambling to find a neurologist who would see Nate because now, as an adult, we could no longer return to his previous team. An ever-changing cocktail of meds were prescribed over the next year and a half, each with its own set of neurological side effects, and none completely eliminating the seizure activity. Not surprisingly, Nate was diagnosed to have “drug resistant epilepsy”. And we were faced with the harsh reality that seizures could occur at any time, even with the right meds, the right diet, the right everything. Nate’s life drastically changed. Living with the parents, unable to drive, friends far away, numerous doctor visits, never-ending med changes and batteries of tests. The strongest, sweetest faithful young woman, Abby, entered Nate’s life at this time and has been by his side ever since. Nate’s diamond in the very rough season of his life.

During one of the many doctor’s visits, one doctor just matter-of-factly stated Nate’s risk for SUDEP (Sudden Unexpected Death in Epilepsy) as if we weren’t doing anything and everything to prevent seizures from happening. Carrie began a mad pursuit of finding doctors who would be willing to consider surgery for Nate. As parents, we clung to Bible verses such as “Be anxious for nothing but in all things by prayer and pleading, let your requests be known to God and the peace which surpasses all understanding will guard your hearts and minds through Christ Jesus.” We were challenged with this verse because, at the time, we were anxious about everything, and going to God in prayer as a first response rather than a last resort did not at all come naturally. As parents, we grieved for our son’s loss of so much and sought the best care possible which in the world of neurology isn’t easy. Good doctors have long waitlists and finding one who has the beautiful balance of skill and empathy is virtually impossible.

After a very difficult appointment with a local Jacksonville neurology team, God just “so happened” to lead Carrie to call a neurology nurse coordinator at All Children’s whom she had contacted almost 2 years ago. No doubt this call was pre-ordained because the nurse coordinator immediately returned Carrie’s call and said the team would be more than willing to treat Nate even though he was no longer officially a “pediatric” patient. What a blessing this team has been! At Johns Hopkins All Children’s Nate has received the very best of attentive, skillful, compassionate care. Through a process called an SEEG, the epilepsy team at All Children’s was able to gather the information they needed to determine exactly where near the abscess scar the seizures were happening. Although the tests were difficult for Nate, we are thankful that the induced seizures with probes directly on his scar revealed exactly what we were praying for them to expose. Surgery to remove the damaged tissue was possible with the hope of minimal side effects. Six weeks and one damaging hurricane later, that is where we are today. Final surgery is behind us with a good prognosis of what we hope to be a new beginning of seizure-free living for Nate.

Every success story is an adversity story, and Nate certainly has plenty of both. Although there were honest ups and downs Nate remained steadfast in practicing what he preaches by continually strengthening his mind, body, and soul. All of us have grown in our faith, believing that God has a greater purpose that we yet cannot see. Nate and Abby have together praised Jesus in all things and pointed many others to Christ. Even in the low days in which Nate felt weak, tired, or plagued with auras, he got up and kept putting one foot in front of the other. We were told by one of the nurses when he was 6 to not apologize for his fighting spirit as it would help him get through. He continues to fight today, and we could not be prouder. It is our hope and prayer that in the next few years, Nate will be off all neuro meds and driving again!

We have been so encouraged by the never-ending prayers and words of support through all of this. We know that we have mat-carrying prayer warriors alongside us and are more than thankful. Our focus has been entirely on our son receiving the care he needs regardless of the expense. It is a difficult and humbling “ask,” but we are at a point where we realize that financial support would also be immensely helpful. Health insurance has been a blessing; however, it doesn’t cover everything. Deductibles, copays, out-of-network services, supplemental care, medications, and out-of-town travel expenses mount over time.

We appreciate your support and most importantly your prayers through this journey.

Dan and Carrie Fagen