Daughter's Birth Helps Save Life of Sudbury Family's Son

March 14, 2004, is what Sudbury father Andres Trevino calls "the best day of my life."

That was the day his oldest daughter Sophia was born. You may think, "How sweet to be so in love with your daughter," but the day has a more significant meaning.

It was the day Sophia gave her older brother, Andy, the chance to live.

The Trevinos are originally from Mexico and were living a happy life when Andy was born in May 1999. But soon after Andy's birth, parents Andres and Ana Paulina found Andy was getting sick often and at greater degrees: lots of life-threatening infections, which included diarrhea, pneumonia and blood and bone infections.

Doctors in Mexico couldn't pinpoint the problem. Andy was put on a cocktail of medicines ("More than what patients with the HIV virus get," Andres said.) for more than a year, which kept him alive, but did not improve his condition.

The Trevinos knew they needed to do something drastic to help their son. And they were willing to do anything.

"We had heard Children's Hospital Boston was the best pediatric hospital in the world," Andres said. "We had a neighbor who worked here, and that’s how we ended up here."

After flights to Chicago, then Boston, the Trevinos rushed straight to the emergency department at Children's. The diagnosis took almost two months before doctors realized Andy had primary immune deficiency, an immune system that is either absent or hampered in its ability to function.

The condition was the focus of a 1976 John Travolta movie, The Boy in the Plastic Bubble.

Andy's system was severely deficient. In his case, he had a defective immune response due to an affected NEMO gene that caused his system to fail, Andres explained.

"A blood sample was taken by a researcher named Jordan Orange," Andres said. "He's an amazing immunologist.

The current chief at Texas Children's Hospital deemed the infection terminal. And while they scurried to find a cure, Andy's parents lived at the hospital for months. Ana Paulina would sleep bedside in Andy's room while Andres would sleep in the playroom.

The Trevinos wound up renting an apartment in Watertown from a friend from Mexico who was away that summer. They soon moved to Waltham and Auburndale before settling in their Sudbury home on Griscom Road five years ago.

During this time, Andres was able to keep working for his family-owned business in electronic commerce.

"It allowed me to work here from my computer," he said. "I was able to work and still be by his side."

While at Children's, Andy received infusions every two weeks to battle infections.

Then one day, Orange presented the Trevinos with some news.

"He told us medicine is all about options," Andres said. "He told us we need to have another baby."

Orange explained a newborn's umbilical cord is full of blood with stem cells that could cure Andy.

"It sounded like science fiction at the time," Andres said.

Attempts to reach Orange for comment were unsuccessful.

The key to saving Andy's life was compatibility using a special technique. First, doctors would have to take out the affected cells using chemotherapy, then implant the new cells, which would cure him.

"It must be a full match or the success rate drops to 30 percent," Andres said. "The way it works is you go to a clinic (the Trevinos went to one in Reading), they stimulate her to produce more eggs, then extract the eggs, inject the sperm to fertilize at the lab, and extract four to eight cells from the embryos using very thin needle."

Once embryos were created, lab technicians in Chicago checked to see if any of the cells were compatible with Andy.

"There were five cycles, 36 embryos, and only two were compatible," Andres said. "My wife went in, transferred both embryos, then we hoped for a baby. We were extremely lucky one of them took. Sofia was born March 14, 2004; the best day of my life."

After the birth at Brigham and Women's Hospital, doctors took the umbilical cord and extracted the blood for its stem cells. An umbilical cord blood bank company named VIACORD assisted in preparing the stem cells.

After the cells are extracted in a lab, the blood is separated from the stem cells, which are then frozen for transport.

"The CEO said we were the first family to use the cells and gave us the service for free," said Andres, who added the service costs more than $1,000.

Andy began his chemo in October 2004 before the stem cells were delivered to Children's. He was only 5 at the time.

The Trevinos had spent nearly 1,000 days at the hospital, treating Andy for side effects from the antibiotics he was receiving.

Fast-forward eight years. Today, Andy is a healthy 13-year-old, who attends and plays his two favorite sports: soccer and baseball.

And Andre has changed careers, working for Boston Children's Hospital Trust. To be able to continue a relationship with the hospital that saved his son's life was something he couldn't let pass.

"I call what we went through extreme parenthood," Andres said. "You don’t get manual for something like this. In Mexico, he wouldn’t have had a chance."