Name: Austin
Age of Diagnosis: 2.5 months old
Date of Diagnosis: 10/20/20
Diagnosis: Primary HLH
Location of Treatment: Egleston Children's Hospital of Atlanta then Vanderbilt Children's Hospital to continue care post transplant
Child’s Interests: Walking with his walker, splashing in the bath, pickles and being outside
Austin seemed like any other baby up until his two month vaccinations. He spiked a high fever overnight that subsided, but then came back a couple weeks later. He was taken to the ER in Columbus, GA for fevers, fatigue and pale skin and was almost immediately life flighted to Egleston Children's Hospital of Atlanta after his blood tests came back showing he had severely low red blood cells, white blood cells and platelets. We were so lucky to have met Dr. Shan there who diagnosed Austin with Primary HLH within a week (Later confirmed with a bone marrow biopsy and genetic testing). He started a regimen of Etoposide (chemo) and steroids to calm down his immune system until he received his transplant from an unrelated donor on December 10th, 2020. Austin tolerated his transplant very well overall with only a few complications including chronic skin GVHD (Jakafi was added to combat this), trouble feeding (he had a G-tube placed before he was discharged) and low sodium. He's now just over a year post transplant and, with the help of many therapies, is learning to eat, walking with a walker and becoming a very social little boy, despite being hidden away almost all of his life. We are so proud of how far he's come and can't wait to see him progress more this year!
