Declan Strong, our Epilepsy Warrior

04/17/2025

03/12/2025

612 days SEIZURE FREE!!

01/25/2025

Make A Wish went all out for us this week.

01/19/2025

Disneyland bound!

01/18/2025

7 years since encephalitis, 3 neurosurgeries, countless hospital visits, 6 failed seizure medications, 1 RNS implant, 18 months seizure free, and 1 day until Disneyland.

My guy Jiminy Cricket said, “Any wish is possible, all it takes is a little courage to set it free.” 🌠

Thank you to everyone who has been here for us these past 7 years and thank you to everyone who was able to show up today to celebrate Declan.

Thank you to Arkansas Children's neurology, rehab, sleep clinic, genetics, rheumatology, pain management, and emergency departments, as well as St. Louis Children's Hospital neurology, for taking such good care of my boy over the years. Thank you to Make-A-Wish Mid-South for bringing joy on our incredible journey.

01/05/2025

We’re planning Declan’s Wish celebration party and I’m looking for some Star Wars cosplayers or possibly Marvel characters who can be in Little Rock either next weekend or on January 18th. Date is tentative still but that’s looking like the perfect day.

12/13/2024

‪Hey swifties making $13 donations to your local children’s hospitals, if you want to make a donation to Arkansas Children’s Hospital, they saved my Declan’s life with brain surgery last year and he’s now 18 months seizure free!! Declan’s a rep and midnights lover 🖤💙

https://support.archildrens.org/fundraiser/5956383‬

12/03/2024

12/03/2024

It’s Giving Tuesday, so check out Declan’s ambassador fundraiser for Arkansas Children's

https://support.archildrens.org/fundraiser/5956383

12/03/2024

Family and Friends,

Please help me support Arkansas Children's by making a donation through my fundraising page for Arkansas Children's Ambassadors. Even a small donation will help me achieve my goal! The process is fast, easy, and secure. Thanks so much for your support.

Help Declan support ACH!

11/16/2024

It’s been awhile since we’ve updated, but Declan’s health has been amazing! He’s 496 days seizure free today. 🎉 November is Epilepsy Awareness Month, so what a great month to celebrate 500 days seizure free.

A few updates:
🔸 Declan was chosen to be an ACH ambassador for 2025-2026!
🔸 Declan’s Make-A-Wish trip has been booked for the end of January and we’re going to DISNEYLAND!!!!
🔸 His AMPS has calmed down considerably since he changed schools last year.
🔸 He’s still having seizure activity in his brain, but the meds and the RNS are working well to keep his brain calm. The seizure activity is like a tornado warning, where all of the ingredients are present, but the tornado isn’t touching down.

Here he is at Halloween as Wiccan from Agatha All Along! 💜

11/16/2024

You’re looking at an Arkansas Children’s Hospital Ambassador!

11/16/2024

🫶🫶

Kellogg's is bringing us a new flavor of Frosted Mini-Wheats: Cocoa! Not only that, but they are raising money for epilepsy awareness with these very limited boxes!

The boxes include a box of the cereal, socks, bracelet and stickers. A box will run $11.26 plus shipping: https://kelloggstore.com/pages/frostedminiwheatscocoa

I will be trying to find a box in stores. I need to compare them to my new favorite cereal of the year, Post Frosted Chocolate Cake.

Are you buying the special box? Waiting to find in stores?

Cheers!

07/09/2024

Happy one year seizure free! Happy one year seizure free! Happy seizure remission, Declan! No more seizures for you!! 🎉

And yes, we sang that and made it up on the spot. It was ridiculously joyful for all of us. 💜🧠⚡️

06/17/2024

Declan is right at a whole year with ZERO seizures!! His neurologist asked us to be ambassadors for ACH and the RNS implant, so we’ll be sharing his epilepsy journey and surgery success with a much larger audience soon! I’m standing in the elevator with teary eyes because we have waited for this day for so long. We’re officially out of the woods! 🥹💜

Here are comparison pictures from when he first started being seen by neurology and today. He’s doubled in size!

06/14/2024

July 30, 2018 altered our lives so drastically and it’s been quite the ride since. On June 14, 2023, exactly one year ago today, Declan had his RNS implant surgery and he hasn’t been back in the hospital since. He’s been seizure free for 11 months.

Here’s a little over a minute of Declan from the first seizure, through his hospital stays, and life since the RNS, with one of his favorite songs playing. In the past year, he’s been able to climb trees, rock climb, ride bikes, enjoy a hot tub, travel, sled down snowy hills, climb mountains, be a Ghostbuster, made so many new friends, and he’s been given the freedom to be a kid again.

I’m grateful for the way our community, near and far, wrapped up our whole family in love. You might see yourself in this video!

💜⚡️🧠

03/20/2024

This week, during , we're raising awareness about the unique health needs of the LGBTQ+ community. Studies suggest that LGBTQ individuals may face higher rates of certain health conditions, including epilepsy, due to various factors like stress, discrimination, and barriers to healthcare access. Let's ensure that everyone, regardless of sexual orientation or gender identity, has access to the care and support they need. https://bit.ly/3PhvYr9