Then-10-year-old Morgan Kelly experienced her first seizure four years ago and come January, she’s ready to celebrate two years seizure free thanks to an innovative surgery.
Morgan was a normal active fifth-grader when, during a soccer game, the ball rolled toward her and she had walked in the opposite direction, zoned out.
“All I could remember was my coach yelling my name and I couldn’t move,” Morgan explained. “I was in fifth grade and it was pretty scary because I had no idea what was happening to me.”
Morgan’s mom, Cindy, said her daughter didn’t have any other medical conditions or head injuries prior that would trigger a seizure.
“It took some testing and different hospitals and doctors visits to actually find out that she would have non-convulsive seizures,” Cindy said. “She would stare for a little bit and check out, then not know what happened.”
Following multiple visits to different doctors, specialists and hospitals after being diagnosed with epilepsy, Morgan landed at Robert Wood Johnson where a doctor recommended her to Johns Hopkins Medicine in Baltimore, Md., for a laser ablation surgery, which was fairly new at the time.
Epilepsy is a neurological disorder that causes seizures and comes in different forms, according to the Epilepsy Foundation. An estimated 3.4 million Americans have epilepsy and experience different types of seizures (non-convulsive, Grand Mal, etc.).
Morgan’s seizures became more severe over time and weren’t helped with medication, which led to the surgery recommendation at the Maryland hospital.
“She was basically socially isolated because she was in and out of school so much, so it was hard to keep up with activities and friendships,” Cindy said. “It was really controlling her life. We were hoping that even if the surgery could cut down the severity of the seizures, then that’d be great.”
Morgan underwent surgery on Jan. 5, 2018 and, since then, has been relieved of her seizures. Doctors inserted a laser scope in Morgan’s temporal lobe through the back of her head, and destroyed the seizure-causing area with heat.
Since the surgery, Morgan has been pulled off two of her three medications and hasn’t experienced a seizure. The duo said a follow-up doctor’s appointment will tell them if Morgan can stop her last medication.
The family was approached by Johns Hopkins in 2018 to document Morgan’s journey with epilepsy and the good that came out of the laser ablation surgery. The video detailing her experiences was published in August 2018.
“For me, it was scary and I couldn’t imagine anyone else who had epilepsy, (who) was younger than me,” Morgan admitted.
She later stated she was fearful what would happen to younger kids when they grow up and still had epilepsy especially with how the seizures can cause the changes Morgan experienced. The video helps her explain along the way how the surgery positively affected her life and the leaps science has made for this to be possible.
Morgan had resumed playing soccer in 2018, however, she stopped by the recommendation of her doctor. As a freshman at Shawnee High School this year, she became active again and joined the Renegades’ freshman volleyball team. The low-contact sport allowed her to build new friendships and gain a sense of oneness with her team.
“I started as a team and finished as one, which felt really good to be a part of something,” Morgan said. “I missed that feeling and enjoyed it when I got to have it again.”
The experience has made Cindy an advocate for Morgan to seek other professional advice before landing at Johns Hopkins. She also developed a deep sense of compassion for those who have “hidden health ailments” such as Asperger’s or depression, or are even just going through a tough point in their lives.
“We might not have the same disease or situation, but we all learned along the way as far as being a health advocate or how social things affect us,” Cindy said. “There’s so many things that I would love to be able to talk to support groups or caregiver groups about, and just help people to let them know they’re not alone.”
After experiencing her neurological disorder, Morgan has hopes of studying the brain and people’s behavior throughout high school and into college – and to try-out again for the volleyball team.
“Socially, it was hard for her because she was a really active kid and it took a lot out of her,” Cindy explained, “but that all being said, there’s opportunity to get life back and get it under control somehow, whether it’d be medications or surgery.”
“It was definitely the scariest time in my life, probably, and there were times when I’d say ‘I’m done’ and want to give up fighting this to see what happens,” Morgan said. “But my family would push me and since I didn’t give up on that, I’m almost two years seizure-free.
“I give them credit for that.”