Nelson's Story

Dante’s ALGS Story

Meet Dante!

When Dante was born just over three years ago in El Salvador, the doctor recognized high levels of bilirubin and he remained under the phototherapy lamp in the hospital for several days.  However similar procedures did not improve his jaundice and after four months he was back in the hospital.  Testing then identified problems with blood coagulation which lead the medical team to order a biopsy of the liver.  The biopsy revealed a low level of intrahepatic bilirubin ducts.  The doctor informed that a liver transplant would be necessary and the world dropped out from under the family. 

Dante’s mother Briggith explains, “We knew that in our home country very few can count on receiving an organ transplant and many children die for this reason.  Two months after the biopsy Dante’s heath worsened and he became very frail. The doctor diagnosed Alagille.  I never imagined that there was a world so full of complications.  It is extremely hard to enter a place where you know absolutely nothing.  I learned about the syndrome, I informed myself and then knew what I was facing.  Economically it was impossible to cover medical expenses to travel abroad and the time began to run out.”

Soon the ascites began, the jaundice rose to a higher level, xanthomas appeared on Dante’s face, his malnutrition was extreme and an additional abnormality in the heart was diagnosed.  When Dante began to vomit blood, Briggith was informed by the Doctors that a liver transplant was necessary soon or Dante would die.

“In that moment God answered each of my tears” says Briggith.

A medical insurance covered the operation and the procedure began in November of 2016.  Dante received a portion of Briggith’s liver and their life changed completely.   Dante takes tacrolimus to avoid rejection, and eats a very healthy diet to stay nourished.  This January, Dante enters Kindergarten.  In March he and his mother will travel to Pennsylvania for his annual transplant check. 

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