Meet Julie, HCP Warrior
“My medical team calls me a unicorn!”
Julie has Hereditary Coproporphyria (HCP), a rare genetic disorder that makes her the only diagnosed child under 12. Her medical team affectionately refers to her as a "unicorn." Julie’s journey began at just 1 year old with unexplained fevers, initially misdiagnosed as a “fever of unknown origin” and later as epilepsy. However, seizures were actually one of the symptoms of HCP, along with metabolic and skin/nerve issues like anhidrosis (a condition where she cannot sweat properly).
Doctors often dismissed her symptoms as “all in her head.”
In November 2023, Julie’s symptoms worsened, bringing intense abdominal pain, seizures, vomiting, and fevers. Despite her family’s pleas for answers, doctors often dismissed her symptoms as “all in her head.” During a family trip meant to help her reset, Julie experienced 14 consecutive seizures, becoming unresponsive and requiring a medical coma in the PICU. A compassionate doctor finally listened to her parents, ordered genetic testing, and discovered the true diagnosis of HCP.
Though Julie now has a name for her condition, being the only child with HCP means that she and her incredible medical team—13 specialists in fields like Hematology Oncology, Gastroenterology, Neurology, and Dermatology—are still paving the way forward together.
“What keeps me going? First, my faith in God and the power of prayer.”
What keeps her going? First, her deep faith in God and the power of prayer. But equally important are her parents, her supportive sister, and her service dog, Raven, who helps her every step of the way. Julie is also thankful for organizations like Morgan’s MAC and the United Porphyrias Association.
Despite her struggles, she hopes that sharing her story will advocate for those who can’t speak up, promote medical advancements, and encourage greater empathy for children with invisible disabilities. Her dreams include playing in the sun, laughing with friends without pain, and experiencing a breakthrough that allows her to enjoy her childhood fully.
Want to share your story? Contact us at katri@porphyria.org
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