He might be the most popular person in town, but it’s doubtful most could correctly identify his last name.
“Jake” has developed a following that is unprecedented for a 15-year-old. That last name, for the record, is Schuster, and that is also very important to the story.
Which began in 2000, when the Schusters learned that their youngest child, Jake – still in utero at the time – had “a tough battle ahead,” according to his father, Carl, mastering the art of understatement.
A routine ultrasound revealed that Jake had a condition known as omphalocele, a rare abdominal wall defect in which the intestines, liver, and occasionally other organs remain outside of the abdomen in a sac because of a defect in the development of the muscles of the abdominal wall.
After additional ultrasounds and visits to neonatal surgeons, Jake’s anxious parents were told that he also had an extremely rare heart condition known as “transposition of the great vessels.” The major blood vessels leaving his heart were reversed, so oxygenated blood produced by his lungs was circulating in a loop through his lungs, rather than supplying oxygen to the rest of his body.
Jake was born on September 8, 2000, with further daunting news: the omphalocele was considerably more complicated than originally believed. The abdominal wall defect was, in fact, part of the attachment of a partial conjoined twin. The twin was incompletely formed above the clavicles and attached to Jake by the omphalocele, chest, and abdomen. While the little body appeared normal externally, it had many duplicate organs – including liver, kidneys and intestinal tract – that were located within the omphalocele and entwined with Jake’s vital organs.
Meanwhile, Jake’s own heart needed correction, as it was partially failing due to the burden of supporting a second body. Over the first four months of his life, Jake underwent numerous critical surgeries. Careful planning, staging and execution were required to reconstruct his vital organ systems, including his heart, lungs, intestinal tract, liver, kidneys, chest and abdominal wall.
In the 15 years since his birth, Jake has undergone 21 surgeries – all at UCLA’s Mattel Children’s Hospital – with remarkable success.
“Jake lost most of his stomach through the surgeries,” said Carl Schuster. “He still gets most of his nutrition through a feeding tube at night, so it’s a little tough for him to lead the life of a normal teenage boy.”
“The unwavering effort and devotion of the hospital staff – among them Drs. Atkinson, S. Devaskar, U. Devaskar, Laks, Shannon, Levy, Patel, Lerner and Nurse Pat, to name just a few of the many specialists who have participated in Jake’s journey – has been invaluable,” said Carl Schuster.
Jake also has enjoyed personal and academic support of the San Marino School District, San Marino National Little League and attended Camp del Corazon. An avid L.A. Kings fan, he has watched every game in the NHL team’s two Stanley Cup runs, closely following the legendary career of goaltender Jonathan Quick. Jake is grateful to all the talented doctors who spent countless hours devising innovative surgeries to improve his life. He is grateful to the friends and family members who have stood by him and supported him through everything.
Jake is finishing up his freshman year at San Marino High School, where he helps out with the Titan freshman football team and the girls’ varsity soccer team, which he became close to because of the participation of his older sister, Alex, who graduated in 2013.
His immediate group of friends includes Wheeler Smith, Max Bradley, Darren Li and Charlie Daves who always have his back. His birth mother, Laura Schuster, and stepmother, Leslie, are at the top of the list of ‘those who love and support Jake.’
So does the staff at UCLA’s Mattel Children’s Hospital, which will honor Jake on Saturday, May 21 with the Extraordinary Child Award at an event that will be held at 3LABS in Culver City. Proceeds will benefit the hospital and be earmarked for in utero research. Jake’s name appears on a star-studded marquis along with Michael Milken and Kate Hudson.
For more information on the benefit, please contact Harper Sloane Productions at (310) 913-6365.