While in the womb, Cali was diagnosed with a congenital heart defect, Tricuspid Atresia. This caused the right side of her heart to be severely underdeveloped and nonfunctional. As a result, Cali would undergo three open-heart surgeries along with several other procedures to correct smaller defects within her heart, so Cali is no stranger to adversity. She's been a fighter since before she was born.
We believe that Cali started to have seizures when she was about seven years old although she wasn't diagnosed until April of 2017 when she was eight. On Easter day of 2017 Cali had a severe seizure that caused her entire body to turn blue and almost put her into cardiac arrest. We've dealt with many frightening moments in Cali's life, but this was like no other; we thought her heart was failing her.
Cali was admitted to the hospital. After an abnormal EEG, an MRI was ordered. The MRI confirmed with the EEG that Cali had slowing in her left temporal lobe where a benign tumor was also found and was determined to be the cause of her seizure activity. She was diagnosed with complex/partial seizures.
Cali was put on anti-seizure medication, and for about a year, she seemed to be responding well to the medication even though she would still have seizures from time to time. April of 2018 was when Cali took a turn for the worse. Out of nowhere she began to have tonic clonic (grand mal) seizures; they were awful. We had to rush her to the hospital twice and she was taken by ambulance twice from school after her rescue medication could not stop her seizures. Because Cali's seizures are the result of a tumor, she's not responding to anti-seizure medication, so her only hope to become seizure free is removal of the tumor. This started us on the journey to surgery. We have always felt that the cardiac care Cali has received in Oklahoma has been great. However, the thought of a craniotomy and lobectomy was overwhelming and heart wrenching, so we started looking for an alternative to this invasive surgery. We found this at Texas Children’s Hospital in Houston where they're ranked #3 in the nation for neurosurgery and are the pioneers of laser ablation surgery for epilepsy patients. We're hoping Cali will have surgery later this year.
November is Epilepsy Awareness Month, and we're hoping that you will join with us in raising awareness for this incurable, heart breaking disorder.
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*100% of proceeds will go directly to support Cali's medical expenses*