Charlene “Charlie” Shirrell and her husband, David (D.J.) are parents to four young men. The youngest, Ashton Shirrell, was diagnosed with refractory/focal epilepsy with complex partial seizures at age 16. He has been to Riley Children’s Hospital locally and to the Mayo Clinic in Rochester, Minn. Over the past two years he has had numerous seizures.
Charlie and her husband now have four boys. Ashton is the youngest. Their guardianship and case from foster care for Zane was finalized on June 15, 2022.
Ashton was first diagnosed officially in June 2021. However, he likely had this going on internally (just not showing any outward signs of epilepsy yet except nausea, vomiting and auras) for about a year before the diagnosis.
Charlie was the VFW’s bar manager for a few years. She left to pursue health care and nursing.
Although Charlie and her husband have insurance, the mounting cost of doctor and hospital visits and medicines have been exceedingly difficult on their family. Ashton must have someone with him 24 hours a day. Charlie is fortunate to work from home at this time, so she is with him. A few months ago, she called the VFW to give an update. VFW members met and then decided to host a Walk, Run and Ride which was held last Saturday.
The walk was about 3 miles (5,000 meters).
Participants were entered into a raffle at the end of the event. There was also a 50-50 drawing and some hot dogs and chips upon returning to the VFW.
Charlie had a number of bracelets that said Epilepsy Awareness and Ashton Strong, which she gave to anyone who signed up that day and paid $10 fundraiser fee.
Make a Wish Trip – Update – Later in October, Ashton and his family will be at an Airbnb with a pool on the beach of Laguna Beach or Huntington near Orange County, Calif.
Medical Updates – Ashton’s epilepsy has progressed rapidly, so his doctors are trying a new medicine (Vimpat) on top of his Oxtellar that he takes every night. He will continue to increase the Vimpat until it controls at least some of his daily seizures.
He has multiple types of seizures, but the medicine only controls the big ones (tonic-clonic) which are the life-threatening ones. It moderately controls his medium ones that pretty much only happen in his sleep. It does not control many of the small ones which he has multiple times every day.
Next Steps – Update – Ashton is scheduled for Stereo EEG brain surgery in the fall, likely November with the Mayo Clinic’s top brain surgeon Dr. Miller, who is booked up until the end of October, so Ashton is on the surgery waiting list now.
Mom, dad and Ashton will be in Rochester for two-and-half weeks to four weeks, depending on what they see and any complications that arise.
They are checking parts of his brain that are dysfunctional including the right frontal lobe, right temporal lobe and the right parietal lobe.
They will also check the leads of this device that are believed to be a possible culprit of the start of his seizures: the orbitofrontal, insula, right cingulate, and possibly the thalamus or occipital lobe of the brain. Basically, the whole right side of his brain.
After the 1st Surgery – Update – “Charlie” and her husband will discuss with the Mayo Clinic surgery team the next step options if removal of a lobe or pieces of different lobes are an option for a second surgery to give Ashton a better quality of daily life and better outcome on his life expectancy.