There were no guarantees, but it was the only chance to reduce the relentless and disruptive seizures.
“We were terrified. They removed part of his brain. Just thinking about the risks if something went wrong made us so nervous. But we wanted her to have a better life,” Johnson said.
While in October, Maddie underwent the six-hour surgery at Mott, led by a pediatric neurosurgeon Hugh Garton, MD, M.Sc.S.. Two days later, she was allowed to go home.
A new life without seizures
“She hasn’t had a seizure since,” Johnson said. Over the next few months, Maddie started talking more and became more and more social. She was able to perform for longer periods of time, eventually discovering her love for Barbies, unicorns, singing and dancing. She was less tired during the day since she could stop all medications.
“It’s like we have a brand new boy. This girl had a ball of energy like I had never seen before,” Johnson said. “We knew it was somewhere in there, but she was still a bit sleepy from all the meds. His personality just blossomed.
Just months after the operation, Maddie even took her first plane for a vacation to Disney World with her mom, dad, Eddie and brothers Dylan, now 9, and Donovan, now almost 18.
“His type of epilepsy is extremely difficult to locate and successfully treat with surgery,” said his pediatric neurologist, Erin Fedak Romanowski, DO, du Mott Comprehensive Pediatric Epilepsy Program. “Most patients need to continue taking medications and are usually not seizure-free without them, even after surgery. His result is quite remarkable.
Today, the seven-year-old is still seizure-free, “bold and loves all that glitters,” her mother said. She’s known for turning every sentence into a song, often begging to paint her nails, addressing people as “sweetheart” and striking up full conversations with strangers in the grocery aisle.
Her Christmas wish list reflects some of her passions: sparkly shoes, fashion dolls and ballet lessons.
Maddie continues physical therapy for issues related to low muscle tone and sees her Mott neurology team every year. Despite some physical and cognitive challenges from severe seizures in early childhood, her parents say she is living her best life yet.
“Our little girl has come all the way here. We still can’t believe she’s completely off all meds. We didn’t think that would ever be possible,” Johnson said. “She’s able to go to school now, play and fight with her siblings and have the energy to do all the usual kids activities. It’s such a joy to see her learn new things every day.
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