Meet Daniel, CEP Warrior
"His journey began almost immediately after birth, when he spent his first months of life in the NICU."
-Mariana, Daniel’s mother.
Daniel was born with Congenital Erythropoietic Porphyria (CEP) and was diagnosed when he was only a couple of days old. His journey began almost immediately after birth and he spent his first months of life in the NICU. After those long early days in the hospital, he finally came home for the first time at two and a half months old.
From that moment on, the hospital remained a big part of Daniel’s life. Our family quickly became familiar with what felt like a second home. We spent most days in appointments at UCSF Children’s Hospital, meeting with doctors, nurses, and specialists who would help care for him throughout his journey.
“Daniel finally underwent a life-changing bone marrow transplant with the hope of curing his CEP.”
-Mariana, Daniel’s mother.
In spite of everything he had to face from such a young age, Daniel developed his own unique way of embracing those experiences. He became well known at the hospital for his love of getting his vitals taken and playing with the machines. In fact, he became so familiar with them that he even learned how to take his own vitals.
Daniel is a very social and active boy who didn’t let his CEP keep him from enjoying life to its fullest, or at least living the life he knew and making the best of it. His bright personality and curiosity helped him connect with everyone around him.
Though the blistering worsened as he got older, Daniel always kept his bright and joyful spirit in the face of the daily medical challenges he had to endure at such a young age.
After almost three years of living with acute CEP and receiving biweekly blood transfusions, Daniel finally underwent a life-changing bone marrow transplant with the hope of curing his CEP.
Daniel with his mother, Mariana.
Today, Daniel is three years post-transplant and thriving. He may be a little guy, but he is a big warrior. His journey has brought many blessings to our family, and has proven that there is hope and that life is worth fighting for.
Daniel’s inspiring story.
Want to share your story? Contact us at katri@porphyria.org
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