Carla’s journey began with a revelation that resonated with uncertainty. Carla was diagnosed with congenital hydrocephalus in-utero in the first trimester. Their physician, unfamiliar with delivering babies diagnosed with hydrocephalus, advocated for abortion, citing a bleak prognosis for her quality of life. Even though there were unknowns in her medical situation, her family stayed strong and hopeful, holding onto the fragile possibility of her recovery.
The family consulted with the chief of neurosurgery, who recommended an early delivery pending the receipt of necessary records. However, even with weekly sonograms, the required documentation was not forwarded, and Carla was born at full-term. Despite initial doubts about Carla’s brain function and quality of life, specialists remarked on her attentive response to sound upon her birth. Confused, the family asked why Carla seemed to react to voices despite medical assessments questioning her brain function. The medical team offered a reassuring perspective: “We can always be surprised by the quality of life.”
Hours later, the family went to visit Carla, finding her isolated in a room apart from the other newborns. Surprisingly, there had been no communication with the neurosurgeon. The family asked the doctor to reach out to the neurosurgeon to ask why Carla was in isolation. Soon after speaking with the neurosurgeon, Carla was quickly taken for her first shunt surgery, which left the family distraught as she emerged crying. The delicate nature of her head, reminiscent of tissue paper, highlighting the importance of addressing her condition with diligence and care. The surgeon was concerned about infection but had hope that Carla’s strength would endure as she underwent surgery after surgery. By the tender age of 10 months, Carla had undergone a staggering total of 13 shunt revisions.
At this time, Carla and her older sister Cassidy found themselves under the loving guardianship of their grandparents, who wholeheartedly embraced the role of full-time parents, despite having limited background information. While Carla displayed the ability to hold a bottle, she struggled to achieve typical developmental milestones such as sitting up. However, her journey was marked by small victories, as she began to utter her first words at just one year old.
At 18 months, Carla underwent corrective eye surgery to address strabismus, commonly known as crossed eyes, paving the way for clearer vision. 
By the age of two, she demonstrated remarkable determination, learning to sit up and navigate her surroundings by “scooting” on her bottom. To safeguard against head injuries during her explorations, Carla wore a soft helmet, a symbol of her resilience in the face of adversity.
For Carla’s third birthday, she received a tricycle that resembled a big wheel. 
With her hands and feet secured by Velcro to prevent slipping, Carla eagerly embraced her new wheels. After just a week of practice, she confidently maneuvered her bike, using it as her preferred mode of transportation everywhere she went—whether it was to daycare, around the house, or out with her family.
By the age of four, Carla relied on a posterior walker until she conquered minor balance challenges by age five, a testament to her tenacity. Despite undergoing evaluation for intellectual delay in second grade and receiving an IQ assessment score of 58, Carla defied expectations with her remarkable ability to articulate herself. Her words flowed effortlessly, concealing any perceived differences as she effortlessly engaged with others. Carla’s resilience knew no bounds as she not only learned to run, jump, and skip like her peers, but excelled in these activities, embodying the spirit of determination at every turn.
At the age of 11 1/2 years, Carla’s shunt quietly malfunctioned, going undetected despite normal pressure readings and unremarkable imaging results.Over the next decade, Carla’s gait gradually altered, necessitating increasing levels of assistance. These years unfolded into a relentless pursuit of answers, marked by a multitude of CT scans and MRIs, alongside genetic testing, Botox injections, and a myriad of therapies. Carla and her family left no stone unturned, exploring every avenue in their quest for solutions.
In January of 2020, Carla endured a rough week with vomiting, seizures, and muscle stiffness, culminating in a diagnosis of Chiari Malformation Type II. Her condition reached a critical point as she required resuscitation after an agonizing 23 minutes. Undeterred by the frightening odds stacked against her, Carla embarked on a grueling five-month hospitalization. Her resilience continued to shine brightly.
Amidst the backdrop of a global pandemic, Carla’s return home was a bittersweet victory, marked by the tireless dedication of her grandparents and sister, who underwent rigorous training in the hospital to provide her with the care she needed. Despite the challenges associated with a tracheostomy tube, ventilator, feeding tube, spinal cord injury, quadriplegia, and the need for full assistance, Carla remained steadfast in her pursuit of her goals. Her continued determination served as a beacon of hope, surpassing the limitations imposed by her condition as she continued to strive for progress and purpose.
Upon returning home, Carla embarked on her journey with three ambitious goals: to regain her ability to speak, to breathe independently, and to recover mobility in her hands. She launched into action, setting new milestones to achieve each day. Undergoing back-to-back outpatient therapy sessions and rigorous personal training, Carla dedicated countless hours to strengthening her body and honing her skills. Her workouts and progress were meticulously documented by her dedicated staff and family, allowing her to review her achievements and share her journey with others. Remarkably, within just six months, Carla had already made significant strides, reducing her reliance on ventilation support, and intensifying her focus on speech and eating assessments.
In early 2021, Carla successfully passed her eating assessment, an exceptional feat considering her C1-C2 spinal cord injury and was approved to consume all foods orally—an unprecedented achievement. Shortly thereafter, she began the first of three sleep studies aimed at eliminating her dependence on ventilator support. With her sister Cassidy serving as her coach, Carla diligently practiced at home until she felt prepared, ultimately passing the assessment on her initial attempt. As she gradually downsized her tracheostomy tube, her voice began to resurface, marking another significant milestone in her journey. Undeterred by the challenges, Carla persisted in her efforts to reduce the tracheostomy tube size, investing nearly a year in preparation for each subsequent sleep study.
By 2022, Carla completed the second sleep study, marking a significant milestone as she no longer required any respiratory support during the day. On her birthday in March, she achieved another momentous feat—lifting her head unassisted for the first time, leaving everyone in awe. This achievement fueled Carla’s determination even further, igniting a passion to surpass her own records, particularly in instances where others doubted her capabilities. When met with skepticism, Carla demonstrated her resilience time and time again, proving naysayers wrong with each determined movement. If someone dared to suggest she couldn’t move her arm, Carla would rise to the challenge, taking just a few moments to defy expectations and showcase her unwavering strength.
By 2023, Carla achieved another milestone, sustaining the ability to hold up her head for over two minutes—an accomplishment that spoke volumes of her perseverance and progress. Celebrating her birthday in March, Carla triumphed once more as she completed her final sleep study. In July, while working on sitting at the edge of a mat table, Carla astounded everyone by suddenly rising to a standing position—a spontaneous display of strength and determination.
In September 2023, Carla peacefully earned her angel wings. Her legacy of boundless strength and determination continues to illuminate the lives of all who were privileged to know her.
Empowering Achievements and Fulfilling Dreams
In 2021, we established a connection with the Motion Project Foundation, an outpatient gym catering to individuals with spinal cord injuries. Carla had the honor of being featured in an M&T commercial alongside Motion Project, showcasing their efforts in fostering community. This exposure made Carla a local celebrity. Our local news channel hosts a “How Was Your Weekend” segment every Monday, and Carla eagerly participated by submitting a photo each week. Her submissions were consistently featured almost every single week throughout 2022 and 2023.
In February 2022, Carla’s sister Cassidy submitted a sports wish application for Carla through the Granted Wish Foundation. Her dream was to meet Josh Allen, quarterback for the Buffalo Bills. Carla received a VIP ticket for the team’s training camp and was permitted to bring along four guests. Additionally, she was pleasantly surprised to receive a large box filled with signed memorabilia in the mail.
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