EAST GRAND RAPIDS, Mich. (WOOD) — In the halls of high schools wanders the trapped noises of worry that students don’t want to be seen — the stress of the next exam; their last locker conversation; homecoming, homework and college preps; even concern about why the likes on Instagram aren’t adding up.
It’s no different at East Grand Rapids High School. But it is different for Laine Richards.
The senior carries her own unique set of worries — part of the statistics to which she’s attached. Richards is a 17-year-old who is the one out of 26 Americans who will develop epilepsy in their life. She’s one in 10 who has seizures. She’s part of a third of epilepsy sufferers who can’t gain control with medicine. And she’s become the one voice at her school who won’t let her epilepsy worries trap her conversation.
“When I was first diagnosed, I was super, super embarrassed,” Richards said, sitting in the halls near the EGR lobby. “I didn’t want anybody to know. I didn’t even want my stepdad to know. I just wanted it to be my mom, my dad and me. I didn’t want anybody to know.”
That was the 6th grade version of herself. She thought that after being diagnosed, it was as simple as taking a pill and forgetting about her new reality.
“Eleven medication mixes and nine failed medications later, I still do have two types of seizures every day,” Richards said.
The type that she hasn’t had in the last 22 months is deadly: a tonic-clonic or grand mal seizure. She has her first one just three days before the beginning of 8th grade.
“It was morning, I had just woken up and I went to sit on the couch, my mom was making us this big breakfast,” Richards recalled. “I don’t really remember anything after that. I remember waking up on the floor and there were a couple of police officers there making sure I was okay. And then an ambulance came and I tried to get up but I couldn’t, I was just so physically exhausted because it was just three minutes of constant shaking.”
Doctors started playing with her medications. But often times epilepsy drugs come with harsh side effects and Richards seemed to be more prone to falling victim to them.
She recounts the sleepless nights with some, the horrifying dreams with others. Some drugs made her head hurt so bad she’d vomit and another made her so short-tempered, forgetting the “a” in Florida set her in an uncontrollable meltdown.
“It’s scary because people die from grand mal seizures. It’s scary knowing there’s a tiny, tiny chance that that can happen,” Richards said. “But because of that, I’ve kind of learned to live every day to the fullest and that’s really all you can do.”
For now, she controls her diagnosis with medications five times a day. Although in 2015, she and her family learned she has a mix of Juvenile Myoclonic Epilepsy and Juvenile Absence Epilepsy, both lifelong conditions with no cure. She still has those seizures every day — some days it’s multiple an hour where she’ll lose her train of thought or experience an uncontrollable jerk. Other days, it’s less prevalent.
It’s that journey she takes every day that has forced her to find freedom in talking about her greatest fears. She credits her involvement with the Epilepsy Foundation of Michigan for bringing her out of the shadows of diagnosis and into the spotlight of awareness.
“I truly believe they’re the reason that I realized that it’s okay to have seizures. It’s okay. You shouldn’t be embarrassed about it,” Richards said. “I think that’s when it started to hit me and that’s when I started participating in the epilepsy walks and that’s when I started participating in camps and meeting other people just like me who went through the exact same thing, and that’s so beyond important to me.”
It’s an importance she takes where ever epilepsy leads. The last three years it’s been on Capitol Hill, lobbying Michigan lawmakers like Sen. Debbie Stabenow and Sen. Gary Peters for vital federal funding.
According the Epilepsy Foundation of Michigan, each year in Michigan the disorder accounts for more than $472 million in direct medical costs or indirect costs like lost or reduced earning and productivity. Kent County accounts for over $30 million of that.
And while she’s been on the biggest stage in her quest for a cure, there is nothing bigger to Richards than the next day — something she knows is not guaranteed from personal experience. She lost a friend to epilepsy a few years ago, an event that also fuels her goals.
She has taken her voice from the steps of Washington D.C. to the hearts of families and kids affected with epilepsy. Now Richards is asking the East Grand Rapids community to hear her. Her cause, the Epilepsy Foundation of Michigan, was selected as the beneficiary to this year’s Hearts of Gold game — the annual fall fundraiser in EGR, celebrated at a Friday football game.
Her goal is to raise $80,000 dollars. She knows her community is capable. Just in her short time raising awareness, she’s personally raised more than $20,000 for epilepsy research throughout the years.
But for Richards, it is more than just money for a cause or cure; it’s dollars for caring. To show those kids who are trapped with the embarrassed conversations of their epilepsy reality, it’s okay to break free — your voice is our strength.
“It will mean that we helped. We helped the cause. We helped stop the stigma,” Richards said. “We’re helping other kids that need medications. We are helping kids that can’t afford to go to camps because their medications are so expensive. It will mean that we helped people and that’s what’s most important to me overall.”
Laine Richards’ mom is on the board of the Epilepsy Foundation of Michigan. Her stepdad, Brian Sterling, is an anchor at WOOD TV8.