Greensburg Daily News, Greensburg, IN

News

November 5, 2013

California teen grateful for second chance at life

BLOOMINGTON – November 22 will be a big day in the Stockton, Calif., household of the Minjarez family.

On that day Marissa Minjarez will celebrate her Sweet Sixteenth birthday, which a few short years ago seemed a milestone this teen would never reach.

Marissa’s parents, John and Hong Minjarez, have been collectively holding their breath about family celebrations and milestones for more than two decades. This family’s transplant journey actually started 22 years ago when their son, Johnathon, was born with a rare genetic disorder called progressive familial intrahepatic cholestasis type 1 (PFIC-1) – the only cure for which is a liver transplant. Johnathon received a cadaver liver at the age of six and has lived a healthy life since.

When Marissa was born Nov. 22, 1997, John and Hong were devastated to hear that their precious baby girl also shared her brother’s diagnosis and his fate. Marissa, too, would require a liver transplant to survive. Her road to transplant, however, has been much more complicated and challenging than Johnathon’s. The onset of PFIC-1 is usually before the age of two, but due to Johnathon’s transplant, Marissa was tested before birth. She was diagnosed with PFIC-1 on the day she was born. As an infant, Marissa struggled with cholestasis (requiring her to live with an external biliary diversion catheter to drain bile from her liver from the age of six months), jaundice, fat malabsorption, failure to thrive and numerous other medical complications. As she grew older, she also suffered from severe itching due to the toxic bile running uncontrolled through her veins.

As she hit her early teen years, Marissa was so weak that she could get out of bed only to use the restroom. She missed her entire freshman year of high school. By the fall of 2011, her parents were told that without a liver transplant, her odds of surviving another two years were grim. Marissa said during a media interview at the time, “I know I am different, but I don’t want to be. I can’t do sports, I can’t take the AP classes that I want to take at school and I can’t go out with my friends. It’s not easy.”

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