LPI diagnosis bring hope and a path forward
As a little girl, I held an innocent belief that miracles were something confined to the enchanting world of movies, a figment of imagination that remained far from reality. Little did I know that God had an extraordinary plan in store for me. My name is Gabriela Palacios, and this is the story of my remarkable journey.
Growing up, every aspect of life presented itself as a challenge for me. From the simple tasks of talking and walking to the basic act of eating, each milestone demanded tremendous effort. Socializing and excelling in academics felt like an uphill battle, as I eventually found myself lagging behind my peers. The constant need to catch up and work three times harder than my classmates to achieve our shared objectives became my everyday reality.
At two years old, I started to get constant ear infections that led to me having ear tubes, and then after I got pneumonia that involved both lungs. I was diagnosed with failure to thrive, acid reflux, and celiac disease.
When I was eight years old, I started experiencing episodes of extreme physical exhaustion. Simple tasks like eating, getting dressed, or even walking became difficult for me. These challenges were not only a burden for me but also for my parents, who had already consulted numerous specialists in an effort to identify the underlying cause of these episodes.
The ramifications were profound, infiltrating every aspect of my life. Sleepless nights became the norm, despite my physical exhaustion, as the condition relentlessly disrupted my rest. Even the most basic act of eating was transformed into a distressing ordeal, as my body struggled to tolerate any food intake, often culminating in frequent bouts of vomiting. My once-vibrant days were eclipsed by unyielding fatigue, leaving me drained and unable to participate in the activities I once cherished.
Throughout these challenging episodes, numerous hospital admissions punctuated my life, as medical professionals grappled to understand the true nature of my condition. The misdiagnosis of seizures by doctors further compounded my predicament, prolonging the pursuit of accurate treatment and understanding.
In June of 2018, my life took an unexpected turn when I received the diagnosis of 60-degree scoliosis. This revelation marked the beginning of a challenging journey, as I confronted this spinal curvature. Initially, I wore a brace in hopes of halting its progression, but despite our best efforts, the curve worsened. It became evident that surgical intervention was imperative, as the condition posed risks to my heart and lungs. My parents were meticulous about selecting the institution and we consulted several hospitals. On July 8th, two days before my 14th birthday while were in a consultation, we received the tragic notice of the sudden passing of my grandfather, which took a big toll on me emotionally. His funeral was on my birthday and I felt that I lost the one person in the world who loved me and never judged me despite everything. I felt like part of me died that day with grandpa's passing.
I faced the prospect of surgery head-on, recognizing that it was the path to ensuring my long-term health and well-being. In the hands of skilled medical professionals, I underwent a transformative procedure that involved the placement of 28 screws and two rods in my back. This life-altering surgery was a testament to the remarkable advancements in medical science and the faith and trust in God.
Sunday, April 8th, 2019, marked a turning point in my life—a day that forever changed my existence for the better, illuminating a path toward newfound freedom and hope. That afternoon, my parents and I visited a Colombian restaurant where I ordered one of my favorite foods, honeycomb soup and pork skin, unaware of the profound impact this meal would have on my life.
My memory of that evening is a mix of my own accounts and the recollections of my parents and my little brother Nicolas, who was 8 years old. As the day drew to a close, I would be settled into bed, exhausted and ready to embrace a peaceful night's sleep. However, slumber evaded me, and a strange restlessness began to overtake me. In a state of sleepwalking, I roamed around the house, aimlessly visiting my brother's room and my parents' room. I found myself inexplicably removing and putting on clothes. I bumped into objects, my actions taking on a perplexing and inexplicable nature.
As this unusual episode unfolded, I became increasingly aggressive, causing concern and alarm for my parents and brother. To document these concerning events, they recorded my behavior, determined to demonstrate the veracity of their concerns to the doctors. However, the situation took a dangerous turn when I impulsively smacked the phone from my father's hand, leading to an unfortunate accident where it fell and cracked.
Recognizing the urgency of the situation, my parents ultimately decided to seek medical attention at the hospital. While they were initially hesitant due to past misdiagnoses of seizures, their instincts told them that something more complex was at play. In the early hours of the morning, around 2 AM, we arrived at the hospital, where Dr. Nelson Obikwu, an extraordinary medical professional, made a critical decision that would alter the course of my health journey.
Dr. Nelson took the initiative to test my ammonia levels. This choice proved to be a pivotal one, as my levels were found to be alarmingly high, measuring 500, far beyond the normal range of 20s. This discovery shed light on the underlying cause of my perplexing symptoms, leading to an immediate transfer to Nicklaus Children's Hospital in Miami, FL.
Nicklaus Children's Hospital became a beacon of hope for me, with the expertise and resources to handle the complexities of metabolic and genetic conditions. With their specialized care, I began a journey of treatment and support that truly transformed my life. I learned that I am patient number 10 in the country diagnosed with LPI.
Now I’m 21 and a sophomore at Nova Southeastern University majoring in Speech Language Pathology and Communication Disorders with a minor in Psychology. Recently, I was accepted into the dual admission program, which secures my spot in the master’s program. I’m also currently a student intern at Play-Based Therapy Clinic, Arley Therapy Services.
I share this to give hope to you. All of our journeys are unique, difficult, and sometimes even dark moments when it feels like there is nothing left to hold us up. I’ve been there, and my parents and brother were there with me, but the spirit of God and His mercy kept me afloat and showed me that He will always be there for me. Allow God into your life, and He will not let you down. Everything can be okay.
Don’t let UCD or LPI define you. They are a part of who we are, but they don’t define our entire story. We are capable of so much more, and with determination and support, we truly can achieve anything.
