Join Us in Uplifting Eisley and Her Family

At the end of February, Nicole and Alex took Eisley in for “spasm-like movements” and were quickly sent to EEG and a Pediatric Neurologist. Finally, at the end of April, after an MRI, a 48-hour EEG hospital stay, and many doctor's appointments in between, she was diagnosed with Epilepsy, focal cortical dysplasia, what originally started as Infantile spasms (which are now epileptic spasms) and focal seizures. Infantile spasms is a very serious seizure type that is often missed, that causes consistent chaos in the brain, sometimes resulting in regression and cognitive disabilities. When Eisley started showing signs of this, she was 15 months, she was already meeting her milestones and still is for the most part, she just turned 2 and is as happy as any other toddler, and we are so thankful for that!

She has been on every front line medication to help control these seizures, even a high-dose steroid called ACTH, she’s also done MANY EEGs and testing during this year. While she has jumped the hurdle of Infantile Spasms, Eisley has still failed all of her medicines which means she is medically refractory, and medicine most likely won’t work to help control seizure activity, we now know that having Focal Cortical Dysplasia is the cause of this.

She recently had a PET scan that confirmed this seizure activity was coming from the left frontal lobe, and is currently only localized there. After her Dr presented her case to the neuroscience center, it was confirmed by all that “disconnecting” this would be the next best option.

Eisley will undergo brain surgery, scheduled for some time late October or early November at Corewell Health (Beaumont Royal Oak Hospital).

There will be a lot of unexpected medical expenses that Nicole and Alex will come up against as they navigate this journey. We want to do as much as we can to support them and help them practically so they can focus on Eisley and her recovery.