Ember Rose Blum

Ember Rose was born July 6, 2024 at 7:42am at Grant Regional Health Center in Lancaster, WI. Upon her arrival, she became very ill. But not visibly ill at that time. Ember was later medflighted to Madison, WI to American Family Children’s Hospital. The many different teams, doctors and nurses worked around the clock, giving ember everything they had. She fought as hard as she could but unfortunately, her body was dying. Ember was pronounced deceased July 10, 2024 at 12:11am. It wasn’t until a couple months later that we received her diagnosis. After multiple tests and extensive genetic testing, it was determined her diagnosis is ACAD9 deficiency. A very rare genetic disorder, resulting in a build up of lactic acid within the body and affecting major organs, causing extremely low survival rates. There is less than 25 reported cases in the scientific literature, with no cure established.