Platt, Brandt

Brandt Platt

What are some of the biggest challenges you’ve faced as a caregiver?​

Our journey didn’t start with a name; it started with a 911 call. For the first two months of Millie’s life, everything was perfect. Then, the seizures began.

As a Fire Fighter and Paramedic, I’ve spent my career responding to emergencies, keeping a cool head, and taking control of chaotic situations. So when she was two months old it didn’t seem out of the ordinary except for she didn’t have a fever. Then they became more frequent, unanswered EEGs, and continued medication failure.

We spent what felt like years in between emergency rooms, trying to schedule neurology appointments, or simply just trying to track down results for medical exams. We watched Millie battle relentlessly just to not have any answers. We knew something was deeply wrong and we were lost.

When we finally received the Dravet syndrome diagnosis, it was a moment of profound, heavy clarity. Finally we had a name that allowed us to stop guessing and start fighting.

What are some of the biggest challenges you’ve faced as a caregiver?

The biggest challenge I’ve faced isn’t the lack of sleep or the medical bills, it’s the mental battle of feeling helpless or hopeless

There are moments where no amount of training can change the outcome. I have never once lost hope in Millie’s future or in our mission to get her well, but I would be lying if I said I haven’t felt hopeless in the quiet moments.

There have been days standing outside the emergency room after Millie has endured an hour-long seizure where the weight of it all was on my shoulders. In those moments, when you’ve advocated, fought, and done everything humanly possible, and she is still struggling, the feeling of hopelessness is a very real feeling. But it doesn’t last.

How has Dravet syndrome impacted you and your family's daily life and routine?

Our daily life has shifted from a set schedule to a “day-by-day” or even “hour-by-hour” reality. We’ve had to become experts at pivoting. Plans are made with the understanding that they might be canceled in a second if a seizure strikes. Especially during the Arizona summers.

But the most profound impact hasn’t been the loss of a schedule. It’s been the incredible resilience of our children. As a father, it’s both humbling and heartbreaking to see my kids have to “roll with the punches.” Yet, they have done so with more grace than I ever could have imagined. They don’t just tolerate the disruptions; they have completely surrounded Millie with love and protection.

Our household has become a team dedicated to one singular goal: Millie’s daily health and her journey to one day being seizure-free. Seeing my children become so dedicated to her care and so aware of her needs has changed our family dynamic forever. We may have lost the predictability of a set schedule, but we have gained a level of family unity and purpose that is unbreakable. We are all in this fight together, and no one (especially not Millie) fights alone.

What advice would you give to a new caregiver whose loved one has just received a Dravet syndrome diagnosis?

My advice to any caregiver standing at the beginning of this road is simple but vital: keep your head up and constantly continue moving forward.

When you first receive the diagnosis, it’s easy to feel like the weight of the future is crashing down on you. It’s okay to feel overwhelmed, and it’s okay to have those moments where you feel hopeless outside an ER room. But don’t let those moments become your permanent residence.

Focus on the next hour, the next treatment, and the next victory. You might have to advocate harder than you ever have before, and you’re going to have to pivot more than you ever planned. Whatever it is, adapt and overcome. As you continue moving forward something will come across your path. Don’t let frustration and fear paralyze you, take a breath, do a little more each day, and keep moving forward.

Are there any specific resources, organizations, or individuals that have been particularly helpful to you?

By a pure miracle we were introduced to Brad from Epilepsy Awareness Day at Disney/Sofie’s Journey. He has been a constant help and everything that is found at the conference.

Resources and information from Dravet Syndrome Foundation on social media and the website.

How do you manage the stress and emotional strain that comes with caregiving?

For my wife and me, the foundation of our resilience is constant communication. We are always talking, checking in on each other’s mental state, and ensuring we are on the same page.

We manage the stress by staying proactive rather than reactive. We are constantly researching, reading, and sharing what we’ve learned about new treatments and therapies. Having clear goals for Millie’s health gives us a sense of purpose and a roadmap to follow, which helps keep the feeling of helplessness at bay.

On a personal level, I rely on a few key pillars to keep my head up.

Physical Health: Working out and getting outside are non-negotiable for me. They provide the mental clarity and physical strength I need to stay “on-call” for my family.

Faith: My relationship with God is my anchor. Prayer, studying the scriptures, and attending church services provide the spiritual peace that I can’t find anywhere else.

Service: It may sound counterintuitive when you are already giving so much as a caregiver, but serving others in my community is one of my greatest outlets. Forgetting about my own problems to help someone else, whether on the job or through my church, actually recharges my battery and puts our struggle into perspective.

By focusing on our goals and leaning into our faith and community, we are able to turn the emotional strain into the fuel we need to keep fighting for Millie’s seizure-free future.

What moments or achievements have brought you hope and joy despite the challenges?

The greatest source of joy in this journey has been seeing Millie’s incredible resilience. We are so proud to share that Millie is the first patient in Arizona to begin this new genetic therapy. Getting to this point required a mountain of advocacy and effort, but we are profoundly grateful to be here. Giving Millie the best possible quality of life is our mission, and seeing her improve a little more each day since starting the treatment has been the ultimate reward.

Beyond the medical milestones, we find immense joy in the “village” we’ve built. Because so many people stepped up for us when we were at our lowest, we have made it a priority to pay it forward. Being able to stand by other families in similar situations and offer them the same support we received has turned our struggle into a source of strength for others.

Finally, Dravet has brought a depth to our family that we never knew was possible. While we certainly have our hard days, this diagnosis has pulled us closer together than ever before. We are a team with a shared purpose. Every small victory, every day she stays stable and every new milestone she hits. It is a celebration for all of us. We are in this together, and seeing that unity in my wife and children is a daily miracle.

In what ways has Dravet Syndrome Foundation (DSF) supported you and your family?

DSF has turned a lonely battle into a collective mission, ensuring that even on our hardest days outside the ER, we know we aren’t fighting alone.

What message or piece of wisdom would you like to share with the broader Dravet syndrome community?

My message to the broader Dravet community is simple: Stay the course. This journey is a marathon, not a sprint, and while the hills are steep, you are not climbing them alone. Keep your head up, focus the next step and on the small victories. Never stop advocating for the life your child deserves. Lastly, make time to stop and smell the roses. The journey you are on is unique and there is beauty in it but sometimes it takes a conscious effort to stop and see it.

Can you describe a moment when you felt particularly supported by DSF and/or the Dravet syndrome community?

Yes, we have talked for a while at the booth that is set up at the Epilepsy Awareness Day at Disney. DSF has always been positive and uplifting

Read More Dravet Stories

Scroll to Top