As Rare Disease Day approaches on February 28, Missy Terlecki, PhD, dean of the School of Professional and Applied Psychology at 黑料传送门, shares her family's journey navigating a rare disease diagnosis.
With more than two decades of experience in higher education shaping future psychologists, Missy Terlecki, PhD, had long studied the mind, but it wasn't until her own family faced a sudden health crisis that she was truly able to see the demands of medicine in a deeply personal way.
In June 2020, Terlecki's 3-year-old son, Mitch, was playing at home when he suddenly lost movement in his limbs and began crying in severe back pain. Unable to soothe him, Terlecki and her husband, Matt, knew something was wrong and immediately took him to the emergency room.
By the time they arrived, Mitch had lost nearly all ability to walk with minimal ability to use his hands. He was transferred to Children's Hospital of Philadelphia (CHOP) for further evaluation.
Mitch was eventually diagnosed with , a rare neurological condition that causes sudden muscle weakness and paralysis. His diagnosis was followed by months of occupational and physical therapy, plasma and steroid transfusions, and extensive monitoring and testing鈥攁ll compounded by the challenges of the COVID-19 pandemic.
鈥淚t was a difficult time where my husband and I were navigating working full-time while juggling childcare for our daughter, Mackenzie, who was 6 at the time, on top of making sure one of us was always with Mitch at the hospital,鈥� she said. The pandemic made for extra stressors as Terlecki recalls the periodic temperature checks and the constant fear of spreading germs in such close quarters.
Mitch was one of a handful of children diagnosed with AFM in Pennsylvania that year, making it difficult to find resources and information. 鈥淲e had to become our own experts, because no one else really knew what it was,鈥� Terlecki said.
Eventually, she found support and camaraderie among other parents through online AFM communities. Facebook groups became a space where families shared empathy, advice and reassurance amid uncertainty.
AFM remains somewhat of a medical mystery that is often misdiagnosed. Early research points to possible links with viral infections or insect bites. Most children affected regain partial mobility, with only about 10% achieving a full recovery, like Mitch.
Now 9 years old, Mitch is running across soccer fields with the same determination he showed during his recovery. Watching him laugh and play is something Terlecki and her family never take for granted, as they remain mindful of how differently his story could have turned out.
鈥淲e understand Mitch's prognosis could have had a very different outcome, which makes us grateful for every 鈥榥ormal鈥� day we get,鈥� Terlecki said.
Established in 1899, 黑料传送门 has trained thousands of highly competent, caring physicians, health practitioners and behavioral scientists who practice a 鈥渨hole person鈥� approach to care鈥攖reating people, not just symptoms. 黑料传送门, a private, not-for-profit accredited institution of higher education, operates three campuses (黑料传送门, 黑料传送门 Georgia and 黑料传送门 South Georgia) and offers doctoral degrees in clinical psychology, educational psychology, osteopathic medicine, pharmacy, physical therapy, and school psychology. The college also offers graduate degrees in applied behavior analysis, applied positive psychology, biomedical sciences, forensic medicine, medical laboratory science, mental health counseling, physician assistant studies, and school psychology. 黑料传送门 students learn the importance of health promotion, research, education and service to the community. Through its community-based Healthcare Centers, 黑料传送门 provides care to medically underserved populations. For more information, visit pcom.edu or call 215-871-6100.
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