Valbona Bushi, 28, knew even before the doctors did: Her daughter Angela’s liver was failing, just as Angela’s younger sister’s had.
At first, emergency room doctors dismissed the kindergartener’s flu-like symptoms as nothing serious. But the next day the 6-year-old's abdomen was slightly swollen. Bushi, whose 18-month-old daughter Alicia had died of liver failure just a few months earlier, rushed Angela back to the hospital near their home in Jacksonville, Fla. After tests revealed the little girl needed a liver transplant and she was referred to Holtz Children’s Hospital, affiliated with the University of Miami Miller School of Medicine.
A new liver would save Angela from imminent death, but doctors wanted to do more -- to try to actually extend her life. Angela, whose parents had moved to Jacksonville from Albania seven years ago, had been newly diagnosed with a rare, fatal genetic disorder called Wolcott-Rallison Syndrome. Only about 60 cases of the disorder -- which causes infant-onset diabetes and liver failure, as well as bone fractures, intellectual impairment and frequent infections -- have been reported. Only one of those children lived into young adulthood. It had killed Angela’s younger sister and damaged Angela's organs.