Mishawaka 10-year-old shares his story of life with epilepsy after surgery to stop seizures

MISHAWAKA, Ind. -- Epilepsy is an incurable condition, but for one Mishawaka 10-year-old, that’s not exactly true. 

Chronic conditions force those who live with them to ask a complicated question: What does it mean to be normal? 

“I wonder what they would say if I had one and I wonder what they would do,” Damion Grimes, the Mishawaka 10-year-old with epilepsy who agreed to share his story with me, says of his seizures.

On the surface, Damion doesn’t look different from any other 10-year-old. He likes sports, especially baseball and basketball. But Damion has had epilepsy all his life.

“There are limitations that we as parents would have to make sure he adhered to protect him in situations where a seizure may happen,” Latangela Bird, Damion’s mom, explains.

It’s something that can make life a little tricky for him and his parents.

“It’s very uneasy and unsettling always having to worry about the outcome,” Bird says.

It means telling his teachers, coaches, and other parents so everyone is prepared and knows what to do, and what not to do.

“Hey, he can’t be out in the sun too long,” Bird says, describing a conversation she’s had.

But epilepsy is the uninvited guest that never leaves.

In January, Damion had a seizure at the Kroc Center in South Bend.

He would have to have brain surgery because Damion’s epilepsy is unique.

“Damion had multiple cavernoma in the brain, but there was one cavernoma in particular that had grown since his last scan in 2015 and that was causing pressure on the surrounding brain and responsible for his epilepsy,” Dr. Jignesh Tailor, a pediatric neurosurgeon at Riley Children’s Hospital, explains.

Cavernoma, or lesions on the brain, is thought to be a genetic condition. But there’s no clear reason why these lesions grow or why they cause seizures, and no intervention stops them from forming.

“If they start to cause hemorrhage or swelling or mass effect or seizures, those are the indications for removing them,” Dr. Tailor says. 

Dr. Tailor also says it’s rare lesions cause epilepsy or need to be operated on.  

In February though, he did a procedure to remove one of Damion’s problematic lesions. 

“It was worrying,” Damion says of the surgery. “I had my stuffed animal to carry me through and everything. But I went in… I didn’t know what I’d be like after.”  

The surgery was a success. Dr. Tailor says it’ll probably be the outlook for some time.  Damion will need regular check-ups on his other lesions, but for now he’s living a life many with epilepsy aspire to – seizure-free.  

“I want to inspire people who have this type of disability – this thing that happens to them – so I want them to feel like they’re not alone,” Damion says.

Damion is far from alone though. Overall, epilepsy isn’t rare. In fact, according to the CDC, 3.5 million people in the US have it, including me (Richard Bodee).  

Yet, as common as the condition is, Dr. Tailor admits there are many basic questions about it still left to answer.  

“Why does epilepsy form?” Dr. Tailor asks. “What are the cells that are involved?”

Dr. Tailor admits epilepsy research nationally is underfunded. 

But in the meantime, while doctors search for the clues locked deep in our brains, it’s strength that carries us through.  

“I want to be strong for him, but really, he’s being strong for me,” Bird says. 

The truth is that warriors come in all shapes and sizes. 

Now there’s common misconceptions about epilepsy, like you’ll swallow your tongue during a seizure or that all seizures are the same.  

If you want to learn more about epilepsy, you can visit the Epilepsy Foundation of America’s website.