Life has a way of testing us in the most unexpected ways. For me, those tests began when I was just two years old. Until that point, my twin brother and I were hitting all our milestones together – walking, talking, and exploring the world as toddlers do. But then, suddenly, I began to regress. I lost my ability to walk, talk, and perform even the most basic tasks for a child my age. It was as though the world I had just begun to engage with was slipping away from me. Doctors were perplexed, and my parents were caught in a whirlwind of misdiagnoses. My condition deteriorated as I began to aspirate food and water into my lungs, and I was constantly falling ill with pneumonia. Despite their best efforts, the doctors could not figure out what was wrong. After countless tests and hospital visits, it was a brain MRI that finally revealed the root of the problem. I had Arnold Chiari Brain Malformation. The condition was severe enough to require immediate surgical intervention. At the age of two, I underwent a brain decompression surgery.
For a while, things improved. My health stabilized, and I began to grow again. I had routine scans every six months to monitor my condition, which eventually spread out to yearly checkups. But the story didn’t end there. In 2014, when I was just 12 years old, I started experiencing occasional debilitating headaches and numbness in my arms. A routine MRI investigated these new symptoms.
A few days later, my world shifted again. My neurosurgeon called my mother to schedule an urgent meeting- but asked her to leave me at home. What followed was the kind of conversation no parent ever wants to hear. Doctors had discovered a 9-millimeter fusiform brain aneurysm in my right middle cerebral artery, which had been silently growing since 2008. Looking back at my previous scans, they found that it had been present all along but had gone unnoticed due to oversight by radiologists/doctors. The aneurysm was dangerously large, and my parents were told that there was nothing the medical team could do. They were advised to go home and cherish the time they had left with me.
But my parents weren’t ready to give up. Refusing to accept that there were no options, they searched for a solution. With the help of the Niekro Foundation, my family connected with Dr. Robert Spetzler at Barrows Institute in Phoenix, Arizona. He was the only surgeon willing to take the risk, at the time. We traveled across the country from Tennessee to Arizona in December 2014, where I underwent complex surgery. Dr. Spetzler successfully clipped and wrapped the aneurysm, after an initial attempt at bypassing the artery failed. I left the hospital with 56 staples in my head, but most importantly, I left with my life.
This journey has not only shaped me physically but mentally and emotionally as well. It instilled in me a resilience that has guided me throughout my life, as well as a deep appreciation for my family’s unwavering support. My parents’ refusal to give up on me, even when faced with the most devastating news, showed me the true meaning of love and perseverance. Their strength has inspired my own.
Today, I’m channeling that strength and determination into my education. I am currently attending the University of Nebraska-Lincoln, majoring in neuroscience, with the goal of becoming a pediatric neurosurgeon. My personal experience ignited this passion within me. Having been on the other side of the operating table, I know how terrifying it is for both the child and their family. I am driven by the desire to offer families hope when they need it most, just as Dr. Spetzler did for mine. I intend to graduate in 2026 with my Bachelor’s degree, after which I plan to attend medical school and begin the long but rewarding path toward becoming a pediatric neurosurgeon.
As I share my story, I want others to know that even in the darkest of times, there is always hope. Life is precious, fragile, and unpredictable- but it is also filled with opportunities for healing, love, and growth. I am beyond grateful for the support of my family and friends, and for the medical team that saved my life.
Before we connected with The Niekro Foundation, I had been diagnosed with a 9-millimeter fusiform brain aneurysm in my right middle cerebral artery. The aneurysm had been growing undetected for six years, and my family was told that there were no viable surgical options. We were facing devastating news with very few answers, which is when we turned to the foundation for guidance and support. Connecting with The Niekro Foundation was truly life-changing for my family and me. At a time when we felt lost and out of options, the foundation provided us with critical resources and connections that ultimately led to my life-saving surgery.
The greatest lesson I’ve learned through my journey is the importance of advocacy – both for yourself and for the people you love. When faced with overwhelming odds and seemingly impossible choices, the best thing you can do is never stop fighting for the care and solutions you deserve. My family’s refusal to accept “no” as an answer saved my life. You have a voice, and it is powerful. Speak up, ask questions, and seek second opinions. Don’t be afraid to pursue every possible avenue, because there is always hope- even when the path forward seems unclear.
