Our 10-year-old son Alex lives with severe refractory epilepsy, cerebral palsy, autism, OCD, and global developmental delay. Alex’s seizures have become increasingly refractory, meaning they no longer respond well to medications.

Recently, Alex has begun experiencing major episodes of status epilepticus, where seizures do not stop and can last for over two hours. These are life threatening medical emergencies that require immediate intervention and hospitalization.

Because his seizures have become more dangerous and difficult to control, his medical team has determined that brain surgery is now his best chance at a safer life.

After a case conference involving many specialists, the neurosurgical team has recommended a complex hemispherotomy.

This surgery is designed to disconnect the parts of Alex’s brain responsible for generating seizures while preserving as much healthy brain tissue as possible in order to protect his motor function. Because of this goal, the surgery will involve anterior and posterior disconnections rather than a single straight separation, making the procedure more delicate and complex.

Like any brain surgery, the risks are significant.

Even with this operation, there is no guarantee that Alex’s seizures will stop. This surgery is the first step in a treatment plan aimed at reducing his seizures and improving his quality of life.

If seizures continue after this surgery, the next step may involve another brain surgery to implant deep brain stimulation (DBS). If that approach also fails to control the seizures, the final option may be a complete hemispherotomy, which could result in loss of function on the right side of his body, including his arm and hand.

While we are hopeful that this first surgery will help Alex and allow him to recover with minimal additional loss of function, we also have to prepare ourselves for the possibility that this journey may become longer and more complicated.

Alex has already spent 28 days in the hospital preparing for this surgery, and our family is now facing several more weeks in hospital while we wait for the operation.

At the moment, Alex’s surgery is scheduled for March 31st, though if an operating room becomes available earlier, the procedure could happen sooner.

During this time, Alex requires constant supervision and care, and our family has been doing everything we can to stay by his side while navigating an incredibly complex medical situation.

This has placed enormous strain on our family.

We are asking for help so that we can focus on Alex and support each other through this time.

Support from this fundraiser will help our family with:

• Allowing Nathan to take time away from work so he can be present with Alex and our family during surgery and recovery

• Childcare support for our daughter while we remain at the hospital

• Accommodations and meals during our extended stay near the hospital

• Transportation and day-to-day expenses while Alex remains hospitalized

• Additional care supports needed for Alex during and after surgery

Our greatest hope is that this surgery will reduce Alex’s seizures and give him a better quality of life. But the reality is that we are entering a difficult and uncertain chapter of his medical journey.

We are doing everything we can to stay strong for our son.

If you are able to donate, share our fundraiser, or keep Alex in your prayers, it means the world to our family.

Thank you for standing with us during this incredibly difficult time.

— Chasidy, Nathen, Alex, and Thea