Name: Alivia known as Livy Rae
Age: 3.5 years old
Diagnosis: Primary HLH Syndrome
Location of Treatment: Diagnosed in Iowa with care transferred to Cincinnati Children’s
Child’s Interests: Music, Dress Up and going to the Zoo
Summary of your child’s medical journey:
Alivia was born a healthy baby girl with our family never ever hearing about HLH, until she was 4 months old and started having uncontrollable fevers after a routine doctor's appointment with vaccines. After a few days of unexplained fevers she was admitted and the next couple months are now a blur. So many long hospital stays, tests, blood draws, blood transfusions, 2 bone marrow biopsy’s, trial and errors with medicines, it truly felt like we were in the dark working so hard to pinpoint what was wrong. But after 8 weeks (using daily anakinra injections to control the HLH along with steroids) we received the diagnosis (bone marrow biopsy results) and decided to consult with HLH Center of Excellence at Cincinnati Children's to learn more and provide her the best chance at fighting against this beast! After consulting we quickly made the decision to transfer her care & begin her treatment protocol. When we started her treatment the HLH was no longer active, but the HLH experts knew based off labs, it was just a matter of time before it would flare up again with a virus, infection or vaccine. She received the 2004 protocol and received her BMT successfully in March of 2019 from an incredible unrelated, international male, that we now are so thankful to have contact with! About 2 months post BMT, she began to lose her donor cells (engraftment) and has continued to do so, she currently is at about 13% donor cells, but is a healthy, smart, active and beautiful little girl! With the low engraftment and high risk of relapse we choose to relocate to be closer to Cincinnati childrens. She currently is on no medicines, treatments, therapy’s or anything at all! She is growing and on track to start preschool next fall!
