Two weeks leading up to her diagnosis, Ava started to have difficulty walking due to being very fatigued. During this time, her parents noticed that her stomach was more swollen than usual and her mood changed Ava went from being a social and happy little girl to detaching herself from family and friends.
On December 23, 2016 she was admitted into the ER at the Children’s Hospital in St. Paul and was diagnosed with Restrictive Cardiomyopathy & Diastolic Heart Failure. The ventricles of her heart expanded and filled with blood which means her heart can’t pump blood properly. It usually leads to heart failure. Ava was then immediately transported to the Minneapolis Children’s Hospital. The next day, doctors did a biopsy on her heart, MRI’s, CT Scans, Echogram and blood work. Her diagnosis was confirmed- Restrictive Cardiomyopathy. She was discharged from the hospital a few days later.
While home, she suffered a stroke and lost the use of her left arm and leg. With extensive physical therapy, they will try and restore movement, but the doctors think the transplant will help regain strength better. After receiving treatment at the Minneapolis Children’s Hospital, she was given a heart specialist and was referred to the Mayo Clinic. On May 10, 2017, her heart was filling up too much so the doctors put her on an ECMO machine. She will need to stay on it until she receives a new heart.