Then & Now: Remingtion

Written by Remi's parents:

"This is our HLH warrior Remington or as we affectionately call her—Remi.

Remi was 3 months old when we began to notice something wasn’t right. She had recurring unexplained high fevers, severe fussiness, and GI issues. I had taken her to the doctor multiple times—even the ER and left with no answers. Finally after seeing a new pediatrician, she tested her hemoglobin and it was 6. We were sent via ambulance to a St. Jude affiliate hospital in Charlotte, NC. She was diagnosed with HLH. She began receiving blood and platelet transfusions. Then they started her on 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 hasn’t needed any additional treatments or medications thankfully. Remi loves gymnastics, reading, and playing with her older sister Jaclyn."

Thank you so much for Remi's family for providing an update to our community!