Alex's Story:
Alex is our 15-year-old daughter, and she has lived with epilepsy since she was five years old.
For most of the last decade, epilepsy has been part of her life—but it wasn't her whole life. Alex was bright, independent, funny, capable, and involved. She learned, communicated, spent time with her family and friends, and continued living life despite seizures and medications.
Over the years, however, her epilepsy became increasingly difficult to control. She tried numerous anti-seizure medications and combinations of treatments, often with limited success or significant side effects. Then, in the spring and summer of 2026, something changed.
Alex's seizures increased dramatically, and we began watching her cognition and ability to function decline alongside them. By late July, we were using rescue medications almost daily just to manage seizure clusters at home.
On August 1, Alex was admitted to Duke Children's Hospital. We thought we were coming in to get her seizures back under control. Instead, our world changed.
August 2026
Alex's seizures progressed into refractory status epilepticus, meaning her brain continued having significant seizure activity despite multiple medications and treatments.
What followed was the most frightening month of our lives.
Alex was transferred to the Pediatric ICU. She required increasingly aggressive treatments, including continuous IV medications and ultimately deep sedation and intubation as doctors attempted to stop the seizure activity.
For approximately two weeks, our daughter was on a ventilator. There were days when we didn't know what recovery would look like.
Our prayers became very simple:
Jesus, please protect her. Please bring our girl back to us. And slowly, she began coming back.
After the medications and sedation were weaned, Alex was extubated and began the difficult process of waking up and recovering.
She initially couldn't speak. She was extremely weak and experienced significant PICU delirium, confusion, disrupted sleep, and agitation. She needed physical, occupational, and speech therapy and assistance with things she had previously done independently.
Then came the victories. She began staying awake longer. She started writing her thoughts and questions. She participated in therapy. And after weeks of silence, we heard Alex's voice again.
There is still a long road ahead, but we will never take those moments for granted.
Where Alex Is Now:
Alex's epilepsy remains extremely complex. Duke has now told us they have done what they can from a medical-management standpoint outside of pursuing epilepsy surgery.
That puts our family at an enormous crossroads.
After everything Alex's brain and body have endured, we want to be certain we have gathered the best information and expertise available before making an irreversible decision.
Our next priority is therefore seeking additional opinions from major pediatric epilepsy centers and determining whether surgery is truly the best path forward—and, if so, what type of surgery gives Alex the best chance of seizure control while protecting as much function as possible.
Alex is already scheduled for a MEG study at Le Bonheur Children's Hospital in Memphis in early October. This specialized brain-mapping study may provide important information about where her seizures originate and whether there is a potential surgical target.
Because that evaluation is already scheduled, Le Bonheur may become an important part of our next chapter. We are also prayerfully considering whether additional opinions are needed before making final decisions.
Above everything else, we are asking God for wisdom and discernment. We aren't praying for a particular answer as much as we are praying that He makes the right answer clear.
What the Coming Months May Hold:
There are still many unknowns, but we know the road ahead will likely include continued neurological care and rehabilitation, management of Alex's ketogenic diet and medications, extensive follow-up testing, travel to Memphis for her MEG, consultations with additional epilepsy specialists, and potentially epilepsy surgery and the recovery that would follow.
Our immediate goal is to help Alex regain as much strength, cognition, independence, and quality of life as possible while simultaneously figuring out how to address the seizures that brought us here.
And we want the freedom to pursue the doctors and treatment options we believe are right for her—even if that means traveling outside North Carolina.
An Unexpected Financial Change:
In the middle of Alex's hospitalization, another major piece of our family's life changed.
I had started a new job only about four months before Alex was hospitalized. I quickly exhausted my available PTO while staying with her at Duke. Because I had not worked there long enough to qualify for FMLA, I was initially allowed to take unpaid leave.
That leave could only be extended for a limited time, and I ultimately lost my job while Alex was still hospitalized. The timing, of course, is difficult.
Right now, our family's immediate future includes Alex's continued recovery, appointments and therapies, travel to Memphis in October, second opinions, and potentially major epilepsy surgery.
Why We Created This GiveSendGo:
We are raising funds to help carry our family through this next season and allow us to focus on getting Alex the care she needs.
Donations will help with lost income, medical expenses, travel and lodging for out-of-state evaluations, meals and transportation while away from home, rehabilitation and therapy needs, upcoming testing, second opinions, and the unexpected expenses that will come if Alex proceeds toward epilepsy surgery.
We don't know exactly how long this road will be or what the final cost will look like. What we do know is that we will keep fighting for our girl. And we believe Jesus will continue providing the next step just as He has throughout this entire journey.
How You Can Help:
If you feel led to give, we are incredibly grateful. If you feel led to share Alex's story, that helps more than you know.
But most importantly, please pray!
Pray for continued healing of Alex's brain and body. Pray for her seizures to decrease. Pray for restoration of her cognition, strength, independence, personality, and joy. Pray that her upcoming MEG provides clear answers. Pray for wisdom about second opinions and surgery. Pray that God places exactly the right physicians in Alex's path.
And please pray for provision for our family as we navigate the loss of income and whatever this next season requires.
We have spent much of this year learning to live one day at a time. We don't know whether the next chapter takes us to Memphis, another hospital, surgery, or somewhere we haven't even considered yet.
But Jesus already knows. He was with Alex when the seizures wouldn't stop. He was with her when she was intubated and deeply sedated. He was with her when she opened her eyes. He was with her when we heard her voice again. And He is already waiting in every place this journey takes us next. Our job is simply to keep trusting.
Thank you for praying for Alex, supporting our family, and helping us continue fighting for our girl.
Jesus, give us wisdom for the road ahead, provide what we need to walk it, and keep carrying Alex every step of the way.
