Meet Bennet, CEP Warrior
"When I was born, I had a rash called petechiae caused by low platelets. Doctors also discovered my spleen was enlarged, and I had severe jaundice with liver damage."
-Bennett, CEP patient.
Hi, my name is Bennett Disney, and I am 4 months old. I have a big sister named Clover, and we are from a small town in Arkansas. I love cuddles with my mom and dad and playing with my sister, especially when she pretends to be a dinosaur to make me laugh.
When I was born, I had a rash called petechiae caused by low platelets. Doctors also discovered my spleen was enlarged, and I had severe jaundice with liver damage. At just 24 hours old, I was life-flighted to Arkansas Children’s Hospital in Little Rock.
“During treatment, I began blistering, which doctors couldn’t explain at the time.”
-Bennett, CEP patient.
Doctors ran countless tests while treating my jaundice under bilirubin lights. During treatment, I began blistering, which doctors couldn’t explain at the time. Every day brought more labs, occupational therapy to help me transition off my NG tube, and lots of rest. After two weeks in the NICU, my liver began healing, my bilirubin levels improved, and I was finally able to go home.
A few weeks later, routine labs showed I was severely anemic, and I was admitted back to the hospital. My doctors ordered a full genetic panel for both me and my parents. After two months of waiting and praying, we finally received my diagnosis: Congenital Erythropoietic Porphyria (CEP).
Bennett with his dad.
Living with CEP isn’t easy. My parents work hard to protect me from the sun, and I receive blood transfusions every three weeks because I am transfusion dependent.
Even through all of this, I have an incredible support system behind me, my mom, dad, family, friends, coworkers, and even their families. People are always checking on me, buying UV-protective clothing, and wearing purple in my honor on May 18th.
To newly diagnosed patients and families: you are not alone, and you are so much stronger than you know.
Bennett’s inspiring story.
Want to share your story? Contact us at katri@porphyria.org
Meet others living with porphyria
