Jace loved people. He loved to make everyone smile. He had a very bold one of a kind laugh that could make any person smile. He loved school and loved to learn. His hobbies included anything that kept his little fingers busy. Just a few months before he passed away he got to go New Hampshire to meet Jimmie Johnson (NASCAR driver) he loved to watch him and the Cubbies play ball.
When Jace was first diagnosed at four years old I was relieved that we finally knew a diagnosis but afraid of the information that was given to us.
Because of SIOD, Jace had medical complications such as renal disease (had to receive dialysis nightly), high blood pressure, immune deficiency (received infusions once a week), short stature, and hip dysplasia. Jace was placed on kidney/bone marrow transplant list just weeks before he passed away that is the furthest we got with his treatment plan.
While he was with us we had to take into deep consideration on how fragile his little body was. We always had to put his needs before our own. Yes, as a parent you are supposed to but with a child so fragile, you can't miss a step. I had to write out all his meds and the times and days they needed to be taken. I had to learn how to do Infusions and dialysis at home which at first was the scariest thing to ever do. While Jace was in the hospital countless times he had to be away from his little brother with was always hard for them both because they were both super close.