In the past I've tried my best to explain Evanna's "special heart", and why it's so incredibly rare, severe, and complex. This video created by Stanford (the hospital we're currently trying to take Evanna too) does an absolutely fantastic job at showing Evanna's heart defect (in its entirety!), and so I just had to share this video.
After watching, I want to explain that it's Evanna's "collateral arteries" (which they refer too in the video) continue to be our biggest issue to date. There is no DNA for them to grow and are very unpredictable (which is why no two MAPCA children are alike, and cardiologists are unable to provide any type of life expectancy for these kids). They are very prone to stenosis and occlude (ie. close off) -- which would prove fatal. Our hope and goal with going to California, is that Dr. Hanley can work his magic and try to see if he can rehabilitate any of her collaterals to potentially improve her prognosis and overall quality of life.