Wesley the Warrior against Epilepsy

Wesley the Warrior against Epilepsy 💜Welcome to Wesley’s epilepsy journey! RNS 2/24/26 💜

We share our family’s real life experience with drug-resistant epilepsy to raise awareness, support families, and offer hope through education, advocacy, and the fact that no one faces epilepsy alone.

‼️ Would strangers know how to help you or your child during a seizure? 💊And how do you carry rescue medication everywhe...
09/04/2026

‼️ Would strangers know how to help you or your child during a seizure? 💊

And how do you carry rescue medication everywhere you go?

I’ve been trying to find a better way to keep all of Wesley’s emergency stuff together, and I finally found this little medical pack on Amazon. It’s small enough to fit in my purse, but holds his rescue medication, RNS magnet, pulse oximeter, gloves, Zofran and his emergency medical information all in one place. Also, his seizure action plan states to give his rescue medication immediately, we do not wait 3 minutes. Would a stranger know what your specific plan is?

With epilepsy, being prepared isn’t optional for us. Seizures don’t wait until you’re home or somewhere convenient. And if I’m ever not right there, I want someone to be able to grab ONE bag and have what they need to help Wesley.

I also love that it very clearly looks like a medical/emergency bag. No digging through my purse trying to explain where everything is in the middle of a seizure.

It gives me a little more peace of mind knowing we’re as prepared as we can be. ❤️

What does everyone else use to carry rescue meds and seizure supplies? I’d love to see your setups!

https://a.co/d/06FfNe5s

6 months post RNS surgery. 💜 (August 24th, I’m a little late!)It’s crazy to think it’s already been six months since Wes...
09/03/2026

6 months post RNS surgery. 💜 (August 24th, I’m a little late!)

It’s crazy to think it’s already been six months since Wesley had his RNS surgery. And I think sometimes when people hear “brain surgery,” they assume that means we made it to the other side.

Six months later, we are still figuring it out. We’re still working to get his RNS to the right settings. He’s still taking 2 daily seizure medications. He’s still having seizures. There wasn’t some magic switch that got flipped when he had surgery.

We’re hopeful, but we’re also still very much in the middle of this.

Probably one of the hardest parts is trying to let Wesley just be a kid while also knowing we can never completely let our guard down. We want him to go places, have fun, be with his friends and do normal 10 year old things. But there’s always that little part of us watching and wondering if he’s okay.

It’s a weird balance of trying to protect him without making his whole childhood about epilepsy.

I think I’m sharing this because I know there are other families who are months or even years into a treatment and still waiting for things to get better. Sometimes you see the surgery, the new medication or the new device and think that’s the finish line.

For us, it wasn’t. It was another step. I remind myself it’s a marathon not a sprint.

Six months later we’re still adjusting, still learning, still having hard days and still hoping we’re getting closer. And through all of it, we’re just trying to let Wesley be Wesley. 💜

We can never fully let our guard down with epilepsy.It’s 116° and Wesley randomly wanted to go outside. That was weird e...
08/28/2026

We can never fully let our guard down with epilepsy.

It’s 116° and Wesley randomly wanted to go outside. That was weird enough. Then dad looked out and he’s just sitting there… staring.

So of course his brain immediately starts.

Is he having a seizure? Is he okay? Why did he suddenly want to go outside just to sit there? Do we give him another minute? Do we go check?

This is the constant game we play. Is this a seizure, or is he just being a kid?

When seizures can be as subtle as staring or just seeming “off,” you question things most parents probably wouldn’t think twice about.

Sometimes I wish we could just let our guard down. 💜

08/26/2026

This video is hard to watch. But this is epilepsy. He is so frustrated.

This is the side people don’t always see. The ugly, heartbreaking side that goes far beyond the seizures themselves.

No parent is prepared to hear these words from their 10-year-old.

Epilepsy has taken so much from him. It’s medications, procedures, appointments, exhaustion, fear, missed experiences, and never knowing when the next seizure will come. It’s watching other kids live their lives without having to think about any of it and wondering why you can’t do the same.

We share the good days, the victories, and the smiles but this is part of Wesley’s story too. And as painful as it is to share, I want people to see it.

Because epilepsy is so much more than seizures. 💜

gofund.me/e7fe5b774

The face you make when you’ve been having cluster seizures and you realize Valtoco is about to be administered. 😳😂As muc...
08/25/2026

The face you make when you’ve been having cluster seizures and you realize Valtoco is about to be administered. 😳😂

As much as Wesley clearly doesn’t love this part, I will never stop being amazed at how quickly his rescue medication can help stop the seizure storm happening in his brain. 💜 Look how red his cheek got when he was having cluster seizures!

Epilepsy can turn an ordinary day into a rescue-med kind of day in an instant. So incredibly thankful we have something that can help when his brain just won’t settle on its own. Hopefully, in the next year we see more control with his RNS.

We also cannot wait for Wesley to get his seizure service dog!! We are 2/3 the way of meeting our goal of $28,000! If you want to help please donate and if you cannot donate share his GoFund me 💜💜💜

gofund.me/e7fe5b774

Lastly, we are incredibly thankful for his school nurse who goes above and beyond to keep Wesley safe before, during, and after his seizures. She administers his rescue medication when needed and stays right by his side afterward, closely monitoring him.

Having someone at school who understands his epilepsy and takes his safety as seriously as we do means more than I could ever put into words. 💜

Epilepsy is so much more than seizures. 💜It’s also the routine blood work to make sure medications aren’t negatively aff...
08/21/2026

Epilepsy is so much more than seizures. 💜

It’s also the routine blood work to make sure medications aren’t negatively affecting things like Wesley’s liver. He also had low iron and vitamin D in the past and we’re checking that too.

It’s the anxiety and PTSD from past blood draws that didn’t go well, making something “routine” feel anything but routine. So much anxiety leading up to this appointment!!

Today wasn’t easy, but he did it. And sometimes after the hard stuff, you just need a yummy drink to make things a little better. 💜

Another part of epilepsy that most people never see.

08/16/2026

💜💜💜 This boy is such an amazing kid!

Help us get his seizure service dog!
Donate directly to Domesti-Pups:
https://www.domesti-pups.org/donate.html

Donations made directly through Domesti-Pups are tax deductible. Please make sure to leave a note with “Wesley Cooke” so the donation is credited toward his service dog.

💜 Donate to or SHARE Wesley’s GoFundMe:
https://gofund.me/e7fe5b774

💜 HELP US GET WESLEY HIS SEIZURE RESPONSE SERVICE DOG! 💜If you’re new to Wesley’s page, welcome to Wesley’s Warriors. 💜W...
08/15/2026

💜 HELP US GET WESLEY HIS SEIZURE RESPONSE SERVICE DOG! 💜

If you’re new to Wesley’s page, welcome to Wesley’s Warriors. 💜

Wesley just turned 10 and has been living with epilepsy for more than five years. His journey has included countless seizures, hospital stays, medications, testing, and most recently, brain surgery to have an RNS device implanted to help monitor and treat his seizures.

Through all of it, our goal has always been the same: keep Wesley safe while still letting him be a kid.

Our next big step is getting Wesley a seizure response service dog through Domesti-Pups. 🐾💜

This dog will be specially trained to help provide another layer of safety for Wesley, assist during and after seizures, and give him more independence as he gets older. For a child living with unpredictable seizures, that kind of support can be truly life-changing.

Unfortunately, a specially trained service dog also comes with a very large financial cost, and we need our village to help us get there.

Over the next year, we’ll be fundraising in every way we can, selling shirts, stickers, and probably anything else we can come up with! 😂 But right now, there are two HUGE ways you can help:

💜 Donate directly to Domesti-Pups:
https://www.domesti-pups.org/donate.html

Donations made directly through Domesti-Pups are tax deductible. Please make sure to leave a note with “Wesley Cooke” so the donation is credited toward his service dog.

💜 Donate to or SHARE Wesley’s GoFundMe:
https://gofund.me/e7fe5b774

Even if donating isn’t possible, sharing this post or his fundraiser helps more than you know. Share it with your friends, family, coworkers, community groups, anyone who might want to be part of getting this incredible kid one step closer to his service dog.

Every $5, every $20, every share and every person who helps spread Wesley’s story gets us a little closer. 🐾

Thank you for cheering Wesley on, whether you’ve been here since his first seizure or you’re just finding his story today.

Welcome to Team Wesley. 💜🐾

🎉💚 WESLEY IS 10!!!! 💚🎉DOUBLE DIGITS. An entire DECADE of Wesley! 🥹Ten years of that smile, that personality, that huge h...
08/11/2026

🎉💚 WESLEY IS 10!!!! 💚🎉

DOUBLE DIGITS. An entire DECADE of Wesley! 🥹

Ten years of that smile, that personality, that huge heart, and a kid who keeps us laughing and constantly on our toes. 😂

He’s adventurous. He’s funny. He’s incredibly smart. He loves big, plays hard, asks a million questions, and absolutely loves cats!!! 🐈‍⬛

This past year asked more of Wesley than most kids should ever have to face. He underwent brain surgery, had an RNS implanted, spent weeks recovering, and continues to navigate life with epilepsy every single day.

During Covid Wesley fell in love with music by Henry Moodie. Perfect enough, he’s coming on tour to Phoenix next month and Wesley will get to go to his first concert and meet him!!!

Happy 10th Birthday to our brave, hilarious, one-of-a-kind boy. We love you more than you could ever know.

Here’s to DOUBLE DIGITS and everything this next decade has waiting for you! 🎂🎈💚

08/09/2026

Epilepsy is part of Wesley’s childhood but we refuse to let it take his childhood away. 💜

Camping. Hiking. Swimming. Whitewater rafting. Boogie boarding. Family adventures. Making memories. Just being a kid.

Does it take more planning? Absolutely. We carry rescue medication everywhere. We know the risks. We take precautions. We always have a plan for what to do if a seizure happens.

But whenever it’s safe to say yes, we will.

Because Wesley deserves a childhood filled with adventures, experiences, laughter, and memories. Not one defined by epilepsy. 💜

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