In January 2020 Kali was admitted to CHOC, when we found out she was experiencing seizures. After an EEG and MRI scan, she was diagnosed with a rare genetic mutation called Hemimegaloencephaly (enlargement of one side of the brain). This condition has caused a lot of abnormal brain activity on the infected side of the brain, which is the cause of her seizures. This condition is typically resolved with surgery, however, Kali’s seizures were being very well controlled with medication, and the doctors decided we didn’t need to rush it. This last March the seizures began to breakthrough again.
We have been in and out of the ER and Neurology at CHOC to adjust her medicine levels, trying to keep her at a therapeutic level high enough to get them back in control. The seizures returning, and recent EEG screenings show that her condition has progressed, and we have no more time to wait for surgery.
Friday, May 7th, she will be checked into CHOC at 5am to prepare her for her partial hemispherectomy. Kali will be in the hospital for at least 2 weeks being closely monitored, and undergoing physical therapy. All doctors, nurses, and specialists at CHOC are very confident that this will ultimately be what saves her from future seizures and need for medication. Plus, with how young she is, she will be able to recover very quickly.
Kali has shocked us all. Not only with her beauty, but with her resilient strength, and continuous happiness. Soon we hope to see her shock the world.
