A Cause Close to Home

CORAL GABLES, Fla. – They were some of the scariest moments of his childhood.

More than once, CJ Daniels and his brother had to endure the sight of their mother, Natalie, going into full-body seizures as a result of her decades-long fight with epilepsy.

And while Daniels and his older brother, Cameron, knew seizure first aid and learned how to keep their mother safe during those seizures, fear always found a way to creep in.

So, too, though did resilience.

“It was definitely scary. Definitely. At a young age, seeing a seizure and being a caregiver, it was crazy for me,” said Daniels. “I feel like I had to grow up extremely fast. My life was a little different from other kids, but just seeing what she went through and having an older brother helped me prepare for it. I just felt like there was nothing we couldn’t do as a family because we had her back.”

Years later, Daniels still has his mother’s back.

The Miami receiver is a vocal advocate for epilepsy awareness and has made it a priority throughout his college career to educate teammates, coaches, college football fans and the community at large about epilepsy and the neurological disorder’s impact on patients and their families.

With November being Epilepsy Awareness Month, Daniels wanted to bring his message to Coral Gables. And so, he, his mother and their family hosted an Epilepsy Awareness Health Summit at the Schwartz Center for Athletic Excellence on Miami’s campus earlier this month. They also visited with pediatric neurology patients at Nicklaus Children’s Hospital.

Attendees at the health summit had an opportunity to yes, meet Daniels and some of his Miami teammates who were in attendance, but also to learn from a series of doctors and epilepsy advocates who shared information on a number of topics, including seizure first aid and what kind of resources are available to those living with epilepsy.

Through Angels of Epilepsy, the charity his mother founded, Daniels held similar events at both LSU and Liberty, where he played before coming to Miami.

Along with providing education and advocating for epilepsy awareness, Angels of Epilepsy helps subsidize the cost of epilepsy prescriptions with discount and gift cards for patients who may need financial support.

It also provides medical ID bracelets and necklaces for epilepsy patients and provides transportation for patients who are unable to drive.

The organization, based in the Atlanta area, has held countless events across the country and internationally in an effort to ensure epilepsy patients know there are resources available to them and they’re not alone in their fight.

“These events have been going on for as long as I can remember,” said Daniels, who serves as the Vice President of Angels of Epilepsy. “They were not as big as we’re doing today, but being around them and seeing what this is all about has only made me want to stand for it more and continuing to spread this awareness. … We want people with epilepsy to know they’re not alone. There are voices out there speaking and we love you guys. You guys are the most courageous people there are, and we want you to know you’re not alone.”

For Daniels and his family, getting that message out there is extraordinarily personal.

Natalie Beavers was diagnosed with epilepsy at age 5, after a high fever sent her body into convulsions. Her parents rushed her to the emergency room where tests revealed scar tissue on the left temporal lobe of her brain.

Visits to neurologists followed. So did years of medication. There were stretches where Beavers had no seizures – one long enough that doctors even suggested taking her off her epilepsy medication.

But by the time she was a freshman in college, the seizures resumed and the scar tissue on her brain had grown. Further testing revealed an additional cyst on her brain that was likely impacting the seizures as well.

Beavers endured two brain operations and while she’s been doing well of late and she has had fewer seizures, she and her family want similar outcomes for epilepsy patients worldwide.

That’s why Angels of Epilepsy’s mission continues.

And the fact that her son is using his platform as a high-level college football player to share their story has, at times, been overwhelming – in the best way possible.

“It has meant so much. I’m very honored by him,” Beavers said. “He started actually becoming an advocate during his high school years, and I started the organization in 2008. His senior year of high school, he became the vice president and he said, ‘Mom, I want to help in any way possible, to raise awareness, to let people know about epilepsy, to support those who are caregivers like, me.’ And I just thought it was so unique.

“My oldest son, Cameron, actually kind of taught CJ about seizure first aid. ‘This is what mom deals with, this is what we have to do,’ and I hated the fact they had to see me go through what I went through with the convulsions and seizures and so forth, but they were always there for me with support. And CJ really wanted that advocacy part. ‘Let me share my mother’s story, let me share my story’ and when he did that, so many other kids said, ‘I have epilepsy’ or ‘I have a mother or father who has epilepsy.’  … It’s been amazing.”

Though Daniels has only been at Miami a short time, his impact on – and off – the field has been noticed.

Several of his teammates were at the receiver’s event and even those who couldn’t be there because they had class or previous commitments noted they’re hardly surprised by Daniels’ efforts to make a difference.

“Even when he was at LSU and Liberty, you could see him posting about the events for his mother. He’s a loving kid, a very caring guy and he loves to make other people laugh,” said Hurricanes receiver Keelan Marion. “He’s never a guy to bring the energy down. … And his doing this, it shows you the type of person he is and the character he has and it shows he’s a bigger person than just outside his football uniform. He cares about the community, too.”

For his part, Daniels would like to see Epilepsy Awareness Month, and purple ribbons become as well-recognized as October’s Breast Cancer Awareness month and its signature pink ribbons.

And he’d like to see Angels of Epilepsy continue to grow, too.

He’s determined to do his part to make sure that it does, especially given how much the organization and its mission mean to his mother.

“Man, she is so courageous. She’s so brave. She has so many attributes that I try to take from her each and every day,” Daniels said. “Seeing everything she’s overcome and seeing her want to give back to others with the same condition, it’s very powerful. She’s just a soldier. She’s my reason why and I want to continue to keep spreading this awareness just to show the love I have for her.”