Ava was born with a rare form of congenital heart disease. She has Ebstein’s anomaly with an atrial septal defect and pulmonary atresia. This occurs in 0.01% of all births. This condition results in heart failure and causes her blood to not oxygenate properly, which impairs her body from functioning. She has required supplemental oxygen for much of her life. She has had to endure a life of illness due to this. The exertion will cause her to turn blue due to the lack of oxygen in her blood. She required major surgery in 2014, called the Glenn procedure, to attempt to correct these issues.
This procedure was temporary, and in 2020 she, unfortunately, started to decline further. Even a trip up to her room became a significant endeavor and recently she had to be carried up the stairs. Her disease progressed to the point where she needed another open-heart procedure, called the Cone procedure. This procedure is extremely complex and only 4 procedures are done per year at the C.S. Mott Children's Hospital. The procedure was done at the C.S. Mott on November 20, 2020. The surgery was completed however three days after the operation, Ava suffered a cardiac arrest. Her heart went into unstable ventricular tachycardia and she required cardiopulmonary resuscitation (CPR). Her heart had to be shocked multiple times to return it to a normal rhythm. She had to be temporarily placed on a ventilator. She became close to being placed on extracorporeal membrane oxygenation (ECMO), also known as the heart and lung machine.
Thankfully, due to the tireless efforts and expertise of the staff in the pediatric cardiac intensive care unit (PCICU) at the C.S. Mott Children's Hospital, Ava has been able to come off of the ventilator as of a few days ago. She is now awake. Her heart rhythm is being kept in check by two strong antiarrhythmic medications.

Ava faces a long road of recovery ahead of her, not only having to recover from open-heart surgery, but also from the complications. She will have to undergo another procedure to insert an implantable cardioverter and defibrillator (ICD) to prevent her heart from stopping again. Further procedures will need to be done throughout her life to change the leads and generator. Beyond this, ava will need to attend multiple visits with different specialists and other health care providers.

This ordeal has changed the Moore family’s life from an already delicate situation to one fraught with difficulty. Both Lucas, an electrician, and Amelia, a registered nurse, are incredibly hard-working individuals. Both have continued to work as much as possible throughout Ava’s illness, however, Amelia has used all of her sick leave to help Ava over the last few months. Lucas unfortunately does not have access to sick leave in his employment.


We are hoping to raise money for the Moore family to help support them during this difficult time. Please consider donating to this cause.