Meet Kelley Dawson

Kelley Dawson started having seizures at the age of 22 months and, in spite of extensive testing, no one could tell her parents exactly why. But for Tim and Kacy Dawson, accepting “we don’t know” as a diagnosis was never going to be an option. When Kelley’s condition continued to worsen to the point where she was having upwards of 20 seizures a day in spite of being on two different seizure medications, her mom knew they were going to have push harder for answers.

“We had to do something different or we were going to lose her completely,” she says. By 2016, Kelley, who was born in 2010 and getting therapy for various developmental delays, was regressing dramatically.

“We are not parents who were going to sit idly by and watch our kid disappear into nothing. We scoured the internet for research, read articles, found social groups of parents of children with similar diagnoses, anything we could find.” Tim’s medical background as a registered nurse anesthetist helped, as he dug into medical journals to try to find answers.

Their concern led them to check Kelley into Arkansas Children’s Hospital for an overnight video electroencephalogram (EEG) in August 2017, hoping to get more data recorded and create a better plan for Kelley. Kacy says the timing felt miraculous, because “that night Kelley had all of her direct tonic-clonic seizures and they were able to map every single one, acknowledging exactly where they came from, where they started and where they traveled to in her brain and across her whole body. It validated our belief that there was something going on with our daughter that needed to be addressed immediately.”

Dr. Erin Walters agreed, and things began moving quickly. After talking with Dr. Erin Willis in the hospital about her diagnosis and having her seizures finally mapped, the Dawsons discussed the best treatment options for their daughter. The decision that surgery was the best option. They brought in Dr. Albert for consultation. Kelley was diagnosed in December 2016 with hemimegalencephaly, or HME, a rare malformation of the brain in which one hemisphere is enlarged – in Kelley’s case, the left side. This was the cause of the seizures and her resistance to seizure medications, and diagnosis also explained her delays with speech and motor skills.

A few months later, Dr. Albert performed a surgical procedure to prevent the left hemisphere, where Kelley’s seizures originate, from communicating with the rest of the body, allowing her to be seizure free. The surgery didn’t come without costs, Tim says, but “Dr. Albert did a phenomenal job preoperatively of telling us what to expect.” Kelley is living with some permanent disabilities post-surgery, but the flip side is she hasn’t had a single seizure since. Tim calls her progress “skyrocketing.” She recently came off one of her seizure medications and is now weaning off her final medicine. “For Kelley to be seizure free and come off all her medicines is such a blessing!” says Kacy.

“We are thriving now instead of surviving,” says Kacy. “She is our miracle girl.”

The Dawsons say that their persistence paid off when they finally found their “dream team” at Arkansas Children’s, with Dr. Albert and Dr. Willis in neurology, Dr. Burroughs in genetics and Dr. Tompkins in rehab. Their advice to other families is to never quit searching for answers and never quit advocating for your child.

“Sometimes you have to think outside the box,” says Tim. “Arkansas Children's is full of out-of-the-box thinkers. Reach out to them. They gave us our daughter back.”

Tim says they looked at other facilities as far as Canada and California, but “they are not home.”

“It’s good to know the people who can take care of her are right down the road,” he says.
Her mom says “Surgery should not be considered a last resort. Kelley undergoing a hemispherotomy saved our girl.”
Kelley, now nine years old, is a happy, thriving student at ACCESS in Little Rock, and big sister to her six-year-old brother, J.P. Her mom says that the sky is the limit for her daughter’s future.

It’s a small wonder that she reportedly shares her parents’ grit and determination. “She has that strong, stubborn will that has gotten her this far,” says Kacy, laughing. “She gets it honestly.”

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