Molly
Diagnosis: Secondary
Location of Treatment: Cincinnati Children's Hospital. We are from Maryville, TN. Fortunately, we had an ER doctor and a PICU doctor who immediately suspected HLH when she started showing signs of being really ill in December.
Molly came home from school with a low-grade fever on November 28th. She was otherwise absolutely fine. We went to her primary care physician when the fevers persisted. It ended up she had enterovirus so we thought that was all we were dealing with. We were wrong. The fevers persisted and we ended up in the ER two more times before we finally were admitted when her liver enzymes were elevated. Within 36 hours, she was in the PICU in critical condition with Multi-system failure. At that point, we were told they were pretty sure we were dealing with HLH and we needed to get to Cincinnati Children's hospital to be managed by the BMT team as quickly as possible. We made arrangements to be flown to CCHMC by Angel Med on the 16th. She was in pretty bad shape when we arrived. She was on a ventilator and was very unstable. She started having seizures shortly after we got here. In addition to HLH, she was diagnosed with TMA and PRES. Molly improved slowly but steadily and moved to the BMT floor on New Year's Day. We actually thought we were being discharged in early February, but then she had a reactivation of the TMA and we had to restart Solaris and steroid treatments. Fast forward to now, and she is miraculously on the mend. We are in rehabilitative therapy and still on treatment for Histoplasmosis and TMA, but we are hopeful she will continue to respond and we can head back home soon! We will always be eternally grateful for the incredible care we received at CCHMC. By the grace of God and the incredible knowledge, skill, dedication, and innovation of the physicians and care team at CCHMC, Molly will be able to go on to live her best life!
Age and Date of Diagnosis: Molly is 12. She actually celebrated her birthday here at Cincinnati Children's Hospital and they did an amazing job making it a great birthday! She became ill on November 28th, but did not get her diagnosis until December 13th. We were flown to Cincinnati Children's on December 16th via air ambulance and have been in-patient ever since. She was in the PICU until 1/1/24. We are now on the BMT floor receiving treatment.
Molly loves everything Disney (especially Disney princesses), playing catch, and listening to Taylor Swift music way too loudly. She loves to dress up, act out movies, and of course sing and dance (when nobody is watching). She enjoys playing outside with friends and LOVES her school. She also loves watching Broadway Musicals!
Short description of individual's journey: Molly is medically complex, but has been relatively stable for many years. She has a primary diagnosis of Down syndrome, but was also born with a heart defect requiring open heart surgery and a pacemaker when she was just three months old. In 2019, she was diagnosed with Polyarticular Juvenile Idiopathic Arthritis which affects the immune system, but it has been well-managed for years.
