Giovanni’s Story
Day one of our initial Hospital stay. This was the first time Giovanni was able to sleep comfortably after hours of being inconsolable.
Giovanni's first smile after his first dose of medication.
Ms. Rachel is Giovanni's main source of comfort during infusions.
Giovanni Today.
When Giovanni was 6 months old he began to have a full body rash that came and went. His father and I started to think it was an allergic reaction, but with the elimination of allergens the rash was still prevalent. He regressed with the ability to roll and eventually became inconsolable when moving in any capacity, resulting in blood-curdling screams. He also experienced daily fevers.
Unfortunately many of these symptoms were explained away by other factors - ear infections, eczema, torticollis, pulled muscles, etc. This contributed to delaying his eventual SJIA diagnosis for many months. While treating a stubborn ear infection his pointer fingers swelled to twice their size. We took him to the hospital and had him checked out for an allergic reaction to the medication, and were told to stop the medication and give Benadryl.
I eventually started to worry there was something bigger causing my baby so much discomfort. I shared my concerns with my husband and Giovanni’s primary care provider, which led to ordering more bloodwork. His results were scary, but also definitively pointed to something serious affecting him. He was anemic and had elevated inflammatory markers. By the end of that week Giovanni was vomiting and stopped eating. At this point we took him back to the hospital.
These pictures show a range of how Giovanni's rash presented over a 5 month period, during different flares.
close-up of infant leg with sjia rash
Close-up of sjia rash on child's arm
Giovanni's rashes presentation when he was going into a MAS flare.
After running a few tests that yielded normal results, I began to fear we would be sent home yet again. To my surprise, “Well what do you think Mom?” left the doctors mouth. My reply was “I think there is something wrong.” Relief filled my body when the doctor said “Then we are going to admit him and figure this thing out.”
We were transported to Rainbow Babies and Children’s Hospital, where we began the journey of finding Giovanni’s diagnosis. After several days and a never ending amount of tests, on June 13, 2024 Giovanni was given the diagnosis of Systemic Juvenile Idiopathic Arthritis (SJIA). He started treatment right away, and for the first time in months Giovanni rolled. We left the hospital with a diagnosis in tow thinking “this was it! Our lives could go back to normal.” Quickly we learned how naive we were to think that would be the last of our hospital admissions. Since his diagnosis Giovanni has had three more hospital stays, multiple changes to the dose of his original medication, as well as additions and changes in supplementary medications. During his most recent stay he was diagnosed with “Macrophage Activation Syndrome” (MAS), a serious and life threatening complication of SJIA if not treated properly.
I spent months worrying over Giovanni and what his life would look like with this disease. There have been countless times holding him down for tests, IV’s, and blood draws. I have done my best to comfort him during overnight procedures and biweekly infusions, all while having two other littles at home that needed their Mama too. I realized more needed to be done in the world of SJIA - more support, more community, more research. This sparked my decision to start The Giving G. I want to help families whose children have been diagnosed with SJIA, going through the same uncertain journey we are. My hope for this organization is that together we will help find a cure for SJIA, all while supporting families and their children fighting to live with this terrible disease.