Our families 

Emma was diagnosed in July 2023 at 16 months old with SJIA complicated with MAS (Macrophage Activation Syndrome). We are from a small rural town in New Mexico and because of how rare this disease is, many providers were unfamiliar with it. After many ER visits we were sent to Albuquerque NM to higher level of care hospital and finally Emma was diagnosed correctly.

Emma has had  14 admissions and many ER visits since June 2023. Due to the severity of her SJIA Emma developed ILD (Interstitial lung disease). We were referred to the Cincinnati Children’s Hospital where we have been since June of 2024. As of today we are preparing to undergo a very much needed Bone Marrow Transplant (BMT) on 03/16/25. Emma will complete 2 weeks of chemotherapy and receive her cells on 03/31/25. We had a difficult time finding her donor, but we have decided I, her mother, will be her donor. It’s unusual and much more risky but we are prepared for the complications that come with a lower match donor. 

Emma had severe rashes throughout her entire body. She developed fevers that would last many days some as high as 104.7. Emmas also experienced nausea, vomiting, diarrhea, and joint pain. While flaring Emma spends almost the entire day resting.

Emma has been very steroid dependent. After trying many other medications, her current regimen involves a daily injection along with 15 other medications as well as oxygen requirements any time she is sleeping. 

Our journey has been rough, but I have hope for my daughter the more I see knowledge of SJIA spreading. We hope this BMT puts Emmas SJIA in remission.  Emma is a bubbly loving girl who is still learning about life. She has a twin and the two are a dynamic duo. Even with all she faces Emma makes efforts through her day to be a typical toddler. Thanks to our care team we are able to manage through some of our toughest days. The support does not go unnoticed and we are very thankful. 

-Written by her Mother