Alivia

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 hospitals stay, tests, blood draws, blood transfusions, 4 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 of using daily anakinra injections to control the HLH along with steroids, we received the diagnosis 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 the 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 When we started her treatment the HLH was no longer active, but the HLH experts knew based off labs, it was just a matter of time before it would flare up again with a virus, infection or vaccine.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 11% 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 children's.

She currently is on no medicines, treatments, therapy’s or anything at all! Livy goes for annual checkups with Dr. Michael Jordan and his team in Cincy yearly, but that’s truly it! She is THRIVING in all things that a 2nd grader should be!

She plays on a travel softball team and enjoys being active! She is now a big sister to a little brother and little sister and wouldn’t trade it for anything! Watching her live her best life still brings us to tears at the most random moments. These are the days we prayed for. We celebrate everything and make every day count as we LIVE, LAUGH, LOVE FOR LIVY RAE!