In less than 2 weeks, we've lost Everlee and Eliana to Biliary Atresia. Eliana is currently receiving palliative care, and her battle is coming to an end.
Ours is still going strong.
Just a week ago, Ellie was enjoying her first taste of a frozen fruit push-up. She was coherent.
Her potential donor's evaluation took 6 weeks, and then she deteriorated quickly. THAT is the nature of Biliary Atresia. That length of time for a donor evaluation is unacceptable.
This isn't the only disease that would benefit from living donation standardizations and a proactive preference, but it is specifically diagnosed in infancy. Unfortunately, infant livers are very hard to come by.
In regards to renal failure/disease, dialysis is a difficult, time-consuming process. Kidney transplants need to happen sooner.
Liver failure is progressive. The goal is to transplant before being extremely ill or ineligible for transplant altogether.
Help us create a dialogue about being proactive and expedient with living donor evaluations, and help babies like Ellie, Everlee, and so many others.
Thank you for sharing and signing!