It started 5 years ago.  She had some facial twitching at night during the summer.  The neurologist told us she had a common form of epilepsy she would grow out of and would be easily controlled, no big deal…. Except it got worse.  6+ meds later and the seizures still weren’t controlled. We tried the modified Atkins diet (ketogenic diet), measured and weighed food, down to 22 carbs a day to no avail.  Then a year ago we had a surgical evaluation and our world was changed forever.  We found out that G2 has an extremely rare autoimmune disease called Rasmussen’s Encephalitis.  (yes google it now).  It affects 1 in 5.2 MILLION kids.  It is thought to be a genetic mutation.  It is the equivalent of losing the genetic lottery. There is no known cure other than a hemispherectomy. That means disconnecting the side of the brain that the body is attacking to stop the attack and hopefully stop the seizures and save the other side of the brain from being damaged.

G2 fought a hard battle for a year.  She underwent IV Immunotherapy every 3 weeks at Children’s Hospital, tried multiple medications including Medical Marijuana, and still continued to have seizures that were not controlled.  Seizures that knocked her to the ground and made her tired.  The doctors helped us to make the difficult decision that it was time for a hemispherectomy surgery to keep her safe and save the good side of her brain. 

This came at a high price.  Disconnecting half of the brain means losing half of your eye-sight.  In her case it is the R side of her brain so she lost the L half of her eyesight in each eye.  She was paralyzed on her L side and lost the functional use of her L hand.  She learned to walk again, but needs AFO brace to help her L foot.

She had a functional hemispherectomy on July 8, 2019 at Cleveland Clinic.  She spent 4 days in the ICU and 10 days in the hospital, followed by 7 weeks of inpatient rehab learning to walk again and function with one arm and new blind spots in her vision.

Four months later after a celebratory trip to Disney world our worst fears came true and the seizures returned. After several more hospitalizations and tests it was determined that there was likely a missed connection left between the two hemispheres. This meant another brain surgery.

In March of 2020 we decided to do the inevitable to try and stop the seizures and G2 had another hemispherectomy. This time an anatomic hemispherectomy where half of the brain is physically removed. Thankfully since this side of the brain had already been disconnected there were no more physical ramifications, other than being weak and needing to recover from brain surgery. Sadly, two weeks later she developed hydrocephalus (swelling in the brain) that required a third brain surgery for a shunt placement. 

I am happy to report, although hesitant to write that as of today, 10 months after her second brain surgery G2 is seizure free. She is still in the process of SLOWLY weaning off her medications and still does physical therapy, occupational therapy and speech therapy several times a week.

But this is not the end of the story. I have decided to think of this as a new beginning.  A chance at life without seizures and falling down steps, and wearing a helmet to keep her safe.  A chance to see what God has planned for her in this new role.  I will never look back…