Kali was only 2 months old when the seizures started. Her parents, Jemma and Adam, were shocked when they got the news in February 2020 that their little girl had not one, not two, but three potentially life-threatening illnesses.
After being transported to Rady Children’s Hospital Orange County (Rady Children’s), formerly CHOC, from a different hospital that couldn’t provide the level of care she required, Kali was tested for and diagnosed with hemimegaloencephaly (HME) and Ohtahara syndrome—both neurological disorders causing severe seizures—and strabismus, an ocular misalignment resulting in crossed eyes.
“We were brand new parents. It was very shocking. It was hard to take in,” Adam shares.
Life-Changing Care
Dr. Tuong-Vi Tran, a Rady Children’s pediatric neurologist and epilepsy specialist, told Jemma and Adam that brain surgery would ultimately be the only path to long-term positive outcomes for Kali’s neurological conditions, giving her a 70-80% chance of being seizure-free.
“Dr. Tran was very upfront and straightforward with all the information we needed to hear but still had the bedside manner,” Adam recalled. “The staff made it very easy to understand the condition and how we were going to move forward.”
In the meantime, while medication kept the seizures at bay and her parents considered the option of major brain surgery, Kali would also have to undergo corrective eye surgery for her strabismus diagnosis.
In July 2020, during the height of COVID-19 visitor restrictions, Adam had to watch his little six-month-old girl get wheeled back to the operating room without him.
“I remember checking her in, and they were saying, at a certain point, I couldn’t go with her,” Adam recalls. “[She] is a very active child, and so she couldn’t help but sort of prop herself up on the bed. I could see her being wheeled away, but she was smiling at all the doctors and just enjoying the ride. It was an interesting feeling to be like, ‘Wow, I can’t comfort her at this point, but she’s comfortable.’ So, it brought a smile to my face.”
Following her surgery, performed by Dr. Rahul Bhola, medical director and chief of the ophthalmology division, Kali’s recovery was very quick. “We didn’t realize how bad her eyes were until they were fixed. Looking back at photos, it’s like night and day,” Adam says.
The Rady Children’s Difference
Kali’s parents could not be more grateful for Dr. Bhola’s expertise, compassion, and leadership. “The whole team over there just seems to have a level of experience and knowledge in whatever their office does—from the front desk to Dr. Bhola himself, performing those procedures,” Adam said.
Dr. Bhola is one of only nine doctors in a 25-mile radius who can perform this surgery—an additional two are a part of the Rady Children’s team as well. Of the others in that radius, Rady Children’s specialists are the only ones operating at a pediatric-only facility. Thanks to philanthropy, we can continue to recruit the best and the brightest to provide kids like Kali with highly specialized care when it’s needed most.
And that care goes way beyond systems and surgeries. It’s a part of everything we do.
Jemma specifically highlights the beautiful relationship that Kali has formed with the supervisor of the ophthalmology department, Mary Telleson: “Any check-up or anything we’re going in for, Mary comes running up to Kali. She loves our daughter so much.”
Adam also had countless praises for a pediatric intensive care unit (PICU) nurse who would come into Kali’s room on her lunch breaks to watch “Family Feud” with their daughter: “Kali loves ‘Family Feud.’ It’s her jam. The nurse would come in and sit with her and laugh with her. She was amazing.”
Beyond the Bedside
Kali went on to have two more surgeries—an eight-hour brain surgery performed by Rady Children’s neurosurgeon Dr. Joffre E. Olaya and another corrective surgery for her eyes. Thanks to exceptional care, cutting-edge treatments, and support funded by philanthrophy, Jemma and Adam are thrilled to report that their sweet little girl has been seizure- and strabismus-free since 2022 and is about to celebrate her sixth birthday.
“If you were to see her in action, you wouldn’t think anything happened,” Adam says with a slight tone of disbelief. “She’s just like any other kid now. We’re looking forward to seeing what she’ll do.”
Kali has decided to dress up as Sparks, her favorite Disney Jr. superhero this year for Halloween. She loves showing off her “SuperKitties” costume—but this time it had something extra special layered on top.
“I want to be a nurse and drive an ambulance when I grow up!” Kali says with a cheeky grin, pointing at her newly donned lab coat.
So, she’s a nurse and a superhero?
“They’re the same thing, right? Nurses are superheroes,” Adam says, smiling at his daughter.
