Meet Finn and his Family.
Just about every child grows up wanting to be a superhero. The cape, the powers, the cool name — its something to aspire to, something to believe in, or at least lose yourself in while facing the difficult world around you.
It’s not often that a child gets the chance to actually be a superhero — but then again, you haven’t met Finn.
Finn is 4 years old, but he’ll make sure you know he’s 4 and a half, and he’ll also have no problem disarming you with locks of curly, golden hair, an infectious smile and room-brightening laugh. Those qualities alone could qualify as super powers when he’s just a few years older, but instead, Finn raises the stakes with a custom-made cape and the occasional ability to sound like a robot.
“I talk to my friends and I sound like a robot…and they say my powers are going off.” Finn says while his voice reverberates, a result of an implanted VNS he’s had for just over a year. And it is in moments like this, where Finn sounds like half boy, half Transformer, that you realize, maybe this superhero stuff isn’t all child’s play.
True to all superhero stories there is a place where the mask comes off and the cape gets hung up. Whether it be Batman’s Batcave or Superman’s Fortress of Solitude, all superheroes have a home and Finn is no different. End Epilepsy spent a morning with Finn and his family at his home to get to know how a little boy with epilepsy became the boy-wonder who is the focal point for team Fighting for Finn.
But as most children know, superhero origin stories often begin in a dark place. Finn’s story is no different.
Finn had his first seizure, a tonic clonic, on August 3rd, 2013 and it’s moment his mom, Annie, still remembers vividly.
“I knew he was having a seizure because I knew what a seizure was, but I personally didn’t really seizure first aid,” Annie explains while Finn and his sister Darby, age 7, draw pictures at the kitchen table. “My impression of it (at that time) was still all of the stuff that you learn is not right, all the stuff you hear like ‘make sure they don’t bite their tongue’, stuff like that and thankfully my husband had training so he knew what to do.”
Annie’s husband and Finn’s dad, Eric, is a deputy and works as a bailiff at a local courthouse. It’s a job that exposed him to seizures but not necessarily epilepsy.
“Working at the courthouse, sometimes I can see up to 3 different people having seizures a day, but that’s mostly just from people coming off of drugs.” Eric says while monitoring the drawing activities at the table. “There isn’t exactly seizure specific training but just from experience you learn what to do but we’d learn a lot more as he (Finn) started having them (seizures).”
As Annie and Eric start to describe everything that would happen over the next year following Finn’s first seizure — the hospital visits, the neurologists, the testing – including two lumbar punctures -, the time away from home and work — it becomes apparent that the memory of confusion and uncertainty isn’t all that distant.
“Finn would always say, “When are we going to fix my head?’” Annie remembers. “He knew something was wrong but it’s not like we were able to fully explain it to him and what made it worse was no one could really explain it to us.”
“In the beginning I was starting to get frustrated because I was like, “Why can’t we figure out why this is happening? I just want a solution” and Dr. Mitchell at CHLA just kept telling me, “There’s no crystal ball, we just need to go through this, to find out what might work for Finn.’”
And while the doctors and neurologists did their work, Finn’s family began to do what any modern family would do, they started sharing.
They shared photos, they shared posts, they shared about Finn, and about epilepsy. Their combined friends on Facebook only tallied in the high hundreds but it turns out the power of social media isn’t just in your direct network.
“People were very supportive and then more things would come out of the woodwork, like “Hey I know somebody who has epilepsy” or I’d be at work and somebody who I was friends with through social media knew somebody else who I wasn’t necessarily friends with and hooked them up with me, like “Hey can you talk to this clerk because her sister’s daughter has epilepsy, can you tell her what Finn’s gone through and what’s helped him?’” Eric says. “It’s not even the social network but its branching off of that, other people you weren’t necessarily friends with in your network, other people reached out to you, you just found out it was more far reaching than you initially had thought.”
Armed with the support of their families and a growing community online, Finn’s family decided to get involved with End Epilepsy. They created a team, Fighting for Finn, and they started fundraising (Check out this Team Captain profile video of their #F2EE event) — but all the while, they wouldn’t stop sharing.
And if you’re wondering what happens when you post a photo of an adorable little boy, wearing a custom-made superhero cape on the internet…? Well, the results are pretty astonishing.
“We met so many people through the online community, where we were able to share stories and different treatments people were trying and also just different ideas for raising awareness or fundraising. We actually met a family from Texas and they came to the Walk last year and walked with us — it’s just been incredible.” Annie recalls.
A common theme for superheroes though, is that they don’t share everything and they aim to conceal certain parts of who they are — a theme all too relatable for the epilepsy community — but as the times change so too do the heroes — and the way those heroes are raised.
“We make it more of a positive thing, like purple is for epilepsy or for Eva (Finn’s adopted sister), when she sees purple she knows it for epilepsy. If we don’t make it a negative thing then hopefully he won’t put a negative connotation to it.” Says Eric. “For example, with his VNS he has a little magnet that can make it go off and his first day of pre-school he was excited to go there and make it go off (and show the class).”
“When we had the fundraiser at the house and everyone came out, at one point an older woman stopped by and said, “All of this is for epilepsy?” and we said it was and she said, “I have epilepsy” and you could sort of tell that she wasn’t used to sharing that but we want to make Finn know it’s okay to share it and he should share it.” Annie says.
It was through this sharing that Super Finn really began to earn his title — that and his uncanny ability to not complain while taking his pills, eating his modified Ketogenic diet and not being able to indulge in fruit snacks with his friends — because as he goes forward, often wearing his cape, more and more people are connecting, sharing their stories and embracing their own Fight.
You see, that’s the true mark of any hero, the ability to inspire others.
As we are wrapping up our morning, Annie looks around the house that is covered in family photos and now, thanks to Finn and Darby, about 20 new drawings, she reflects on the last two years.
“I just always remind myself, and one day we’ll remind Finn, that as hard as this journey has been, we’re still so fortunate. I was watching the Care + Cure video the other day, and the boy in that video just breaks your heart. It’s for people like that who we all have to keep fighting for.”
Then at this exact moment, using a new power, “super timing”, Super Finn runs over to give a personalized drawing with his “signature” to say thank you for coming. As Annie and Eric promt him and his sister to say their goodbyes and to say thank you, Finn’s voice starts to reverberate again.
“Your powers are going again!” Darby exclaims while smiling at Finn.
“Yeah-h-h-h-h. M-y-y-y sup-p-er-r-r power-s-s-s!” Finn bellows just before darting off down the hallway — off to go save an imaginary world — all the while not realizing just how much good he’s doing in the real one.
*Editor’s note: If you’d like to connect with Finn and his team on social media, you can visit his Facebook page and as always, you can connect with End Epilepsy on our Facebook page or on Twitter @EndEpilepsy