JARDINE: Parent, politician push to give Modesto boy shot at normal life

Bureaucrats who move at a snail's pace. A mother's refusal to take "no" for an answer. A brother's love for martial arts. A politician who made good on a promise.

It's taken this collection of factors to put young Sargis Merzy on a plane to Boston, where he'll soon have the first in a series of major operations intended to let him live and play like a normal boy.

The 10-year-old was born with venous malformations, which one medical Web site describes as "abnormal clusters of blood vessels."

For some, they show up as minimal birthmarks. Other kids have them on their lips, feet or other parts of the body. It's not pretty, but they can live with it.

Sargis' case, though, goes way beyond extreme.

A fourth-grader at Modesto's Stockard Coffee Elementary School, he has gigantic lumps on his sides, back and hips, and on the upper parts of his legs.

They've just kept growing, and a child so effusive and gregarious by nature lives in constant danger of bleeding to death should any one of them rupture. He wears Spandex-style vests for protection. These lumps collectively weigh more than 12 pounds — roughly 10 percent of his total body weight — forcing him to spend part of each day in a wheelchair because his legs simply tucker out.

Because these venous growths have wrapped around some of his organs, his doctors in the Bay Area determined it was too risky to remove them surgically.

His mother, Suzan Merzy, refused to accept that.

Five years ago, Sargis began bleeding. His father, Sami Merzy, saved his life, said Samia Luo, Sami Merzy's sister and Sargis' aunt.

"My brother plugged (the opening) with his thumb," Luo said. "We nearly lost him. He could have bled to death."

The Merzys spent the next three months at UC San Francisco Medical Center.

"It took five surgeries to stop the bleeding," Suzan Merzy said.

Doctors there told her they could do no more for Sargis, deeming him inoperable because the veins had grown so extensively. So she searched the Internet, worked the phones, wrote e-mails and letters, and found a doctor in Chicago willing to remove the lumps.

But Sargis is insured through California Children's Services, so the agency needed to approve of any out-of-state procedures and would do so only with UCSF's blessing. UCSF had no working relationship with the Chicago doctor, so CCS declined to authorize the surgery.

Desperate, Suzan wrote to Oprah Winfrey, President Barack Obama and then-Gov. Arnold Schwarzenegger and anyone else who she thought might take an interest in her son's condition, publicize his case and pressure the CCS to respond.

No such luck.

That changed one evening last winter when Suzan took her son, 15-year-old son Zaia, to the north Modesto martial arts school where he had earned his black belt in tae kwon do. Sargis came with them.

Another student there happened to be the son of Anthony Cannella, the former Ceres mayor who had just won a state Senate seat and awaited his Dec. 6 swearing-in ceremony.

He saw Sargis and wondered about the condition.

"The boy looked very uncomfortable," Cannella said.

The martial arts instructor introduced Cannella and Suzan Merzy. Cannella told her he'd just been elected to the Legislature and offered to help.

"She relayed problems she was having with children's services at the state," Cannella said.

Just two days into office, Cannella instructed his chief of staff, Erin Guerrero, to look into the case and get it moving through the system.

"Our job is to keep the bureaucratic wheels moving," Guerrero said.

Although UCSF didn't endorse the Chicago physician, it was familiar with Dr. Steven Fishman, who handles such cases as Sargis' at Children's Hospital Boston. Sargis and his parents went there to meet with Fishman in January. UCSF endorsed the surgery, which originally was scheduled for May 10 in Beantown. Even so, Sargis' case plodded ever so slowly through the CCS system, and six days before the scheduled surgery, the Merzys still didn't have the agency's approval.

So Cannella placed a personal call to Toby Douglas, director of the state's Department of Health Care Services, which oversees CCS.

"I told him, 'This is important,' " Cannella said. "The young man's life is at stake."

The operation had to be rescheduled for July 19. This time, an approval went through.

Monday, Sargis and his parents will board a flight to Boston courtesy of the Children's Miracle Network. He'll begin testing and prepping Wednesday for his surgery six days later.

Other operations will follow because his lumps are too massive and invasive to remove in one try. No matter. Sargis and his family believe he will have a fighting chance at a long and healthy life.

"And when I'm done with all this," Sargis said, "I'm going to go to tae kwon do to become a master, just like my brother."

Jeff Jardine's column appears Sundays, Tuesdays and Thursdays in Local News. He can be reached at jjardine@modbee.com or (209) 578-2383.