Brielle's Story, why we walk
Her fight has become our purpose.
A little bit of Brielle's journey - created by Barrow Neurological Foundation
February 26,2024
It was a Monday, that's the day everything split in two: the life Brielle had before, and the life that she's living now. Brielle had been home for the weekend sick with a bug. She was perking up, laughing again, talking about driving back to the University of Arizona where she was thriving as a freshman. She was full of plans, full of energy. The house felt normal again. And then, in an instant, normal was gone. Early that morning, without warning, Brielle collapsed into a seizure. A violent, unrelenting seizure that wouldn’t stop. Her body was shaking with a force I couldn’t comprehend. Her breathing changed and was intermittent, starting and stopping. Her eyes looked right through me. She wasn't there anymore. Time warped. My hands shook as I held her head and kept her body safe. Jeff immediately called 911, I was unable to think watching our daughter’s body fight against itself. It was unimaginable. The paramedics rushed in, and suddenly Brielle's bedroom became a trauma scene, machines, wires, voices firmly shouting commands.
I wanted to hold her, but all I could do was watch as they loaded her into the ambulance. Jeff and I rushed behind the ambulance to meet them at the hospital.
The First ICU
At the trauma hospital, we were gently stopped in the hallway as several nurses guided us away and told us that doctors were working on Brielle. We couldn't see her yet. I panicked on the inside but knew they need space to save B. Within minutes, they told us they had intubated Brielle and placed her into a medically induced coma. Hours earlier, she was talking and laughing as she shared stories about her roommate, sorority date parties, and classes. Now machines were breathing for her, drugs were forcing her body to be still in order to keep her alive. We lived in that ICU for a week. The days blurred together.
Her medical team worked tirelessly, but nothing was working. The team fought for her but her body was slipping away, piece by piece. I remember feeling helpless watching her skin pale, her body swell, and just a shell of my little girl, knowing we were losing her. When her medical team gently told us they had reached the limits of what could be done, my heart sank. We had run out of options, except for one. Barrow Neurological Institute. It was her only hope. But transferring her there was risky; she was so fragile and unstable. Still, deep down, we knew it was the only chance she had to survive. After a week at the trauma hospital, she was carefully tranferred to Barrow.
Barrow Neuro Criticalcare ICU
At Barrow, everything shifted. From the moment she arrived, she was surrounded by a level of care I can hardly put into words. She needed one-on-one nursing care day and night. The neurologists didn’t just check in, they lived this fight with us. They talked to us at 2 a.m., explained things over and over when exhaustion had clouded our minds, answered questions we didn’t even know how to ask. And when we were breaking, they didn’t look away. One night, I hesitantly asked the question I’d been too afraid to say out loud: At what point do you stop? At what point do you tell us there’s nothing more you can do? The doctor looked at me with reassurance and said "we never give up". And they didn’t. And neither did Brielle.
Six More Weeks
She stayed in her coma, tethered to a ventilator, for another six long weeks. Six weeks of talking to her knowing she wasn't going to respond but hoping she could hear our words of encouragement and our prayers. Six weeks of so many monitors it was overwhelming, my heart stopping with every odd beep or alarm. The sound of the ventilator was strange, steady, inhuman, but it became my lifeline. That hissing sound meant she was still alive. That rhythm meant her body hadn’t given out. I was oddly comforted by this. Every day we leaned close to her. Whispered her name. Held her hand. Stroked her face. Never knowing if she could hear us. Never knowing if it might be the last time. The weight of those moments were hard, yet somehow, she held on. Hour after hour. And then, slowly, impossibly we saw signs that B was responding to the countless treatments and the nonstop dedication from the doctors and nurses at Barrow. Our girl was waking, with a lot of hard work ahead of her. But Brielle was ready to fight her way back.
Intense Rehab
During Brielle’s time in inpatient and outpatient rehab, her determination and grit were powerful. We knew she was strong but we didn't know she was capable of this level of push and determination. Rehab required three hours of hard work a day, but that was never enough for her, she wanted more. She asked to be pushed harder, even when she was already exhausted, because she knew what was at stake. Every single day, she put in extra work to fight for her ability to walk, talk, eat, and even see again. It wasn’t easy, there were plenty of tears and moments where progress felt painfully slow, but she kept working hard with a positive attitude. Watching her pour everything she had into her recovery was heartbreaking and inspiring because we could see how badly she wanted her life back.
After
Today, life looks different than it did before February 26th. Before, Brielle was a freshman at U of A, a bright, thriving girl with her whole world ahead of her. After, Brielle lives with drug resistant epilepsy and the lasting effects of FIRES, and unpredictable seizures. But her spirit, her fight, has only grown stronger. Every single day, she shows us what resilience looks like. It’s not clean or easy. It’s messy, exhausting, and filled with setbacks. But it’s also filled with grit, courage, and a kind of beauty I can’t put into words. She is relearning, rebuilding, and teaching us how to keep going when everything you thought you knew about life is torn apart. She wants to share her journey with others to provide education, understanding and hope. We will always be grateful for the extraordinary team at Barrow who refused to give up, and for Brielle, who showed us what strength and a love for life really looks like.