Declan Strong, our Epilepsy Warrior

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. 💜🧠⚡️

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!

Caregivers need care, support, and moments of respite to sustain themselves through their journey. This is especially true for caregivers supporting loved ones with epilepsy, where the demands can be both physically and emotionally taxing.

https://www.epilepsyallianceamerica.org/caregivers-self-care-isnt-selfish/

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

The Epilepsy Foundation has teamed up with Iaso Ventures, a prominent venture capital firm, to launch the Iaso NeuroImpact Fund. This partnership aims to drive innovation in epilepsy care through pioneering therapeutics, diagnostics, and technologies. Learn more about how this partnership will revolutionize epilepsy treatment: https://bit.ly/3TFXelz

“I hope you never have to sit in a hospital and hear a diagnosis for your child.

I hope you never have to hold them down for regular exams and bloodwork,

or watch them be carried off into surgery by a stranger.

I hope you never have to fight for their right to exist,

And live in fear that they won’t.

I hope you never have to beg your child to breathe,

or even imagine what that’s like.

I hope you never know the pain of watching your child’s pain,

the exhaustion of watching their fight,

or the strength that is needed when they are weak.

I hope you never but if you do,

I hope you know you that you can,

and that you are capable.

I hope you never have to but if you do,

I hope you know that you are not alone.”

- Carla Moore from Payton’s Path

Declan is officially SEVEN months seizure free!!! His RNS is still detecting seizure activity, but no seizures are happening, which means we have achieved seizure control. 🎉 His epilepsy team increased his RNS charge slightly and now his visits have been changed from every 3 months to every 6 months. 💜

Merry Christmas Declan!!!

Happy Holidays to everyone. Thank you for a year of support, love, and encouragement through all of the hospital stays and surgeries.

The most magical part of this Christmas is the sight of Declan standing in front of the tree tonight and the best gift of all is the milestone of six months seizure free.

Declan on Christmas Eve throughout the years, including tonight. 🎄

Accurate 👇🏼

Shaving his head for surgery this year turned into his hair growing back with the curls he had when he was little 🥹

We made Christmas cookies 🍪

I know all of you want to make sure Declan has a wonderful Christmas and I appreciate that so many of you feel so connected to his journey. While Declan has had the most challenging experience, all of his siblings experienced each of these hospital visits, doctor’s appointments, surgeries, and everything else too. I truly appreciate the generosity of our community, but I know Declan will have an even better Christmas if his siblings get to share it with him. So if you have sent, or plan to send, gifts for Declan, please remember his siblings too. 🎄

Is it a Seizure or Epilepsy? What Parents Should Know | Arkansas Children's Blog Learn how the neurology team at Arkansas Children's Northwest diagnoses and treats both seizures and epilepsy.

Happy Thanksgiving!!!

Why do we care if seizures are drug-resistant? After all, once the seizure stops, there's nothing to really worry about, right?

Wrong.

Drug-resistant seizures can have serious consequences, especially in childhood. And most especially if they begin in infancy.

A child can have regression or loss of motor function, speech, or other developmental milestones. They may stop eating. They might develop characteristics of autism.

Most frightening are the chances of dying due to sudden unexplained death due to epilepsy (known as SUDEP), which is as high as 1 in 150 in those with drug-resistant seizures.

In fact, one in every 833 children with drug-resistant epilepsy die each year.

Learn about the consequences of drug-resistant seizures in childhood on our website.

What have been the consequences of drug-resistant seizures for your child? Share your story

The Lifelong Impact of Having a Sibling with a Disability This session is all about understanding the brothers and sisters of people with disabilities. Research shows that siblings of people with disabilities have their own special qualities and needs, but often, families and experts don't really know the best ways to help them out. We're going to dive int...

Declan put our tree up this weekend. 🎄

It’s THE Eddie Munster with Declan’s magazine cover!!! How cool is this?