Name: Remington “Remi”
Age and Date of Diagnosis: 3 years old, diagnosed 02/04/2019 at the age of 4 months old
Diagnosis: Primary HLH
Location of Treatment: We received the first part of her treatment at a St. Jude affiliate hospital in Charlotte, NC, and had her bone marrow transplant at Cincinnati Children’s Hospital.
Child’s Interests: Remi loves playing outside, reading, music, and playing with her big sister Jaclyn.
Remi was 3 months old when we began to notice something wasn’t right. She had recurring unexplained high fevers, severe fussiness, and vomiting. I had taken her to the doctor multiple times, and the ER and left with no answers. Finally after seeing a new pediatrician, she tested her hemoglobin and realized it was a 6. We were sent via ambulance to a St. Jude affiliate hospital where she was diagnosed with HLH. She began receiving blood and platelet transfusions, and also started steroids. A few days later we began the recommended regimen of Etoposide (chemo), and steroid treatment while we awaited the genetic test results.
Remi has multiple mutations of the UNC13D gene. Once it was inevitable that Remi would need a bone marrow transplant we decided to go to Cincinnati Children’s hospital. They have a phenomenal staff, and extensive knowledge of HLH.
Remi got her new cells from an unrelated donor in May of 2019 at 8 months old. Though there were complications along our journey, Remi did well post transplant. She is now a thriving, happy, rambunctious, smart, and full of life 3 year old. We are so grateful for Remi and the joy she brings to the world.
