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Randall was having what are called focal seizures, which occur in one area or side of the brain, according to Johns Hopkins Medicine. The symptoms vary based on the area or side of the brain impacted. Symptoms can be categorized as motor, sensory, autonomic or psychic. For Randall, the seizures surfaced as prolonged staring for 30 to 45 seconds at a time every few minutes and “pill rolling,” or a repetitive motion of rubbing thumb and forefinger back and forth. After another ER visit, doctors prescribed Kepra, the first of what would eventually add up to seven medications, to treat Randall.

A nurse practitioner, Doyle felt compelled to do more research, and decided to seek a second opinion. She found a different doctor, pediatric neurosurgeon Dr. Saba Ahmad based at UI Health at University of Illinois Chicago, and secured an appointment. The day of the appointment, Randall seized. From that point, his symptoms worsened, including numbness and tingling in his legs—which he described as “fire and water”—and severe mood changes. Suddenly, he was mean and agitated. A new medication was prescribed, which proved effective in the short-term and helped eliminate the need for so many others.

In December 2019, he was directed to undergo an MRI and a CT scan. With COVID-19 running rampant, elective procedures were delayed, and he was scheduled to undergo both in March 2020. They saw some relief in the interim, Doyle said.

From November 2019 through June 2020 Randall was seizure-free—until he wasn’t.

When another struck, they visited the ER again, this time with Randall testing positive and being hospitalized for COVID-19, and undergoing the necessary medical scans while there, Doyle said. It was then that everything would change.

The right frontal lobe of Randall’s brain had atrophied due to a rare condition called Rasmussen’s encephalitis. The chronic, inflammatory neurological disease affects only one hemisphere (half) of the brain, and most often occurs in children under the age of 10. It surfaces in symptoms like frequent and severe seizures, inflammation of the brain, mental deterioration and progressive loss of neurological functions including motor skills, speech and eventual paralysis on one side of the body, according to the National Institute of Neurological Disorders and Stroke.

“They don’t know what causes it, they just know it happens,” Doyle said.

They had to act fast, she said. Treatment options were to administer steroids, or—the scarier, more drastic option—eradicate the half of the brain impacted. Brain surgery would mean removal/dissection of the right hemisphere of his brain. Her medical background kicked in, Doyle said.

“I just knew how the brain works, and that the neural pathways were forming,” she said. “I knew he only had until 7 (years old) for that brain to find a new way to work things out.

“I had to come out of ‘Mommy mode,’ jump into ‘nurse mode’ really quick.”

The decision was clear, she said.

“I didn’t have to question what I was going to do,” Doyle said. “It was a major surgery, but it was the best thing for him.”

On Dec. 17, 2020, in a surgery 13 hours long, Dr. Sandi Lam of Lurie Children’s Hospital removed the right hemisphere of Randall’s brain.

“And he’s been seizure-free since then,” Doyle said.

In some ways, the damage to his brain was already done by the time he reached surgery, Doyle said. He could no longer walk by that point, she noted. Since the surgery, he has had to relearn basic skills like walking and reading.

“He’s adapted pretty well, he understands what happened,” she said. “He doesn’t remember his life prior to. He knows that he used to have seizures, and that ‘Mommy’s friends’ saved him, and did surgery on him.”

Randall currently reads on a first-grade level, but they’re working on it. He undergoes weekly physical therapy to help with his movement. He is active in Taekwondo—just attained his yellow belt—and runs track, the latter for which he competes in the Special Olympics.

In many ways, they’ve gone back to the basics. He never learned how to tie his shoes, so they’re working on that, and he hasn’t ridden a bike since he was 4. The disconnect with his right hemisphere rendered the left side of his body weaker, including arm and leg movement. But his spirit is indomitable, Doyle said.

“Will he ever be grade-level? No,” Doyle said. “There is a 7 percent chance of him going to college.

“Really, right now, I focus on giving him life skills, teaching him how to manage his money, basic reading/math, addition/subtraction, just so he can be okay on his own.

“He understands I won’t be around forever, Mommy has to show you how to take care of yourself.”

Doyle, who teaches at UIC’s College of Nursing, works to keep him active, physically and socially.

“I keep him in Special Olympics, I keep him in activities with others who share disabilities with him, and also those who don’t, so that he knows how to function,” she said.

“He’s going to need his friends as he gets older.”

Randall is a charmer who loves hugs, she said. He is older brother to 5-year-old sister Jordyn, who attends Willow School.

“He is fun, and he’s so funny,” she said. “The girls love him in school, they tell him he’s funny.”

He seems more focused on his abilities than what he can’t do, she said. He wants to be a police officer when he grows up.

“He’s very resilient,” she added. “I can appreciate him not too much focusing on what he can’t do, but what he can, but asking for help to navigate what he struggles with. He’s very kind, he loves hugs.”

He loves baseball—his favorite is Tim Anderson of the Chicago White Sox—and enjoys being with his family. He likes cooking, and Doyle has gotten him adaptive tools that he can use to help. She’s working on getting him back to riding a bike, too. He’s entered into the Great Bike Giveaway, a contest through Friendship Circle. A Michigan-based nonprofit, Friendship Circle provides programs and support to the families of individuals with special needs. The bike giveaway creates a platform for families of those with special needs to rally to win bikes that would best suit someone with special needs. The contest offers several bikes to choose from, specific to each contestant’s needs. The bikes can be expensive, and are often not covered by insurance. The one Randall needs would cost an approximate $2,100.

Contestants are vying for online votes, along with raising funds. People can vote for Randall through his entry page. They need a minimum of 50 votes to be entered in to a raffle for the bike, and have raised $10 of their $2,100 goal so far. The contest began March 1 and ends March 29.

Like so much of what she does daily now, she wants to remind Randall how far he’s come. His smile—the left side slightly lopsided by the disconnect of his hemispheres—is adorable, she said, and one that so many people love.

“One girl is going to love that crooked smile,” she reminds him.

“… I just want him to know that he’s loved and accepted. The world can be cruel, as much as I would love to protect him from it, I know I can’t.”

Follow Randall’s journey on his Instagram, named BlackBoy_Oneder—after the remaining half of his brain.

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