Greensburg Daily News, Greensburg, IN

November 5, 2013

California teen grateful for second chance at life

Greensburg Daily News

---- — 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.”

Having first-hand knowledge about the cost of a liver transplant and having already experienced the medical costs associated with keeping Marissa alive, John and Hong turned to the Children’s Organ Transplant Association (COTA) for help and guidance. Almost immediately, a team of friends and family members got to work organizing COTA fundraisers in honor of Marissa.

“COTA has reduced any stress regarding the financial aspects of this journey and this has given us hope. It means the world to us that COTA has a team of wonderful professionals who help so many during a very difficult time in a family’s life. We are very grateful,” said Hong and John.

At nearly the same time the COTA team started raising funds for transplant-related expenses, family members started being tested for compatibility to be Marissa’s living donor. A match was found and on Jan. 19, 2012, Marissa received a portion of her aunt’s liver, and a second chance at life.

Following the transplant, Marissa experienced complications with a bile leakage and a flow problem in her main hepatic artery. At one point, her transplant surgeons thought, due to the artery complication, Marissa would require another transplant. Devastated at the news, the family tried to remain hopeful. One week later they were told the situation was surgically repairable and Marissa would not need a second transplant. In March 2012, Marissa went home and started the long process of recovery and healing.

John and Hong are filled with gratitude for two transplants, and for the scores of people who have helped make sure they have been able to keep two kids alive without being financially devastated.

According to them, “Post-transplant we were told Marissa would likely need a second transplant, which caused us great worry. But her body has been able to heal itself with no further surgery currently on the horizon. A true miracle and again, we are so thankful.”

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