SARMIENTO FAMILY

Their son’s health fades but their hope shines — for his sake

By KEVIN D. THOMPSON
Palm Beach Post Staff Writer

The frail little boy in the orange T-shirt should be playing soccer — his favorite sport — with his brother and friends.
Instead, 9-year-old Sebastian Sarmiento is lying in a bed at Holtz Children’s Hospital in Miami where he’s hooked up to three IVs which are feeding him the protein, vitamins and medicine his 66-pound body desperately needs to stay alive.
Life can be cruel. And it definitely has been for Sebastian. In September 2007, the then third-grade student at Elbridge Gale Elementary School in Wellington was feeling tired and feverish. He wasn’t eating. When his mother, Adriana, noticed her son’s neck was swollen, she took him to the doctor. Blood tests came back positive: Sebastian had a high-risk form of leukemia. He was given a 50 percent chance of surviving.
“I can’t describe how I felt,” recalls Francisco Sarmiento, Sebastian’s father. “You feel like your kid is going to die.”
Both Adriana, a 39-year-old assistant manager at Men’s Wearhouse in Wellington, and Francisco, a 44-year-old civil engineer in the construction business, worked tirelessly to balance their work schedules to spend time with their ailing son. (The Sarmientos also have another son, Francisco Jr., 14, a student Wellington’s Polo Park Middle School.)
Things got worse when Francisco was laid off last year — two days before New Year’s. Although Francisco found another job two months later, he got laid off again last month. “My boss knew things were tough for me,” Francisco says quietly outside of his son’s sixth-floor room, “but I understood he had a business to run.”
Spiraling medical bills and the cost of gas (Adriana says they spent $1,000 in three months alone) are starting to take a financial toll. Francisco estimates their insurance has paid about $400,000 in hospital bills so far. “But we have to cover 10 percent of that,” he points out. With only one income, the Sarmientos are worried. “I know we have to pay for the house and the car,” Adriana says, “but our first priority is that Sebastian gets better.”
Sebastian’s cancer was in remission for several months, but it returned six months ago in his testicles. Radiation and chemotherapy treatments have left him without hair and extremely tired. “I don’t want to do much,” Sebastian says softly. He needs a bone marrow transplant to live, but that transplant can’t happen until the leukemia goes back into remission. And the doctors aren’t certain when — or if — that will happen.
Meanwhile, the Sarmientos, despite all the tears and heartache and unimaginable stress, continue to keep a positive attitude and find strength in God. Francisco says they have a very good reason to stay strong. “We want to give Sebastian many, many years,” he says. “That’s our motivation.”

THE SARMIENTOS’ WISH: The family needs assistance with household expenses. They recently had to ask their church for help with their utility bills. In September, family members had a fund-raiser and raised $3,500, but that’s not nearly enough. At present, there’s only one income coming in and the family could use help to help pay the mortgage. They could also use gas money, food cards, clothes for their two sons, age-appropriate toys and gift certificates to local area attractions.

Nominated by Connor Moran Children’s Cancer Foundation, 825 S. U.S. Hwy 1, Suite 200, Jupiter, FL 33477 (561) 741-1144

UPDATE

For the Sarmiento family, the best gift of all was having their leukema-stricken son home for the holidays - even if it was only for a little while.

“He couldn’t wait to see everyone,” says Francisco Sarmiento, Sebastian’s father.

Since reading about Sebastian in Season to Share, Wellington residents have been eager to bring a little more joy into the 9-year-old’s life. Teri Moran, executive director of the Connor Moran Children’s Cancer Foundation in Jupiter, says well-wishing neighbors have raised over $1,000 the last three weeks. The money will be used for sneakers, gas cards, games, DVDs and gift cards to Walmart, Target and Regal Cinemas. The Sarmientos’ mortgage and utilities were also paid for December and they will be paid again in January.

As for Sebastian, his cancer has yet to go into remission and doctors are still unable to give him the bone marrow transplant he needs. But the family refuses to lose faith. “We’re trying to stay as hopeful as possible,” says Adrianna Sarmiento, Sebastian’s mom. “And we’re praying a lot.”

UPDATE Jan. 31, 2009

Boy, 9, featured in ‘Season to Share,’ loses battle with cancer

By DON JORDAN
Palm Beach Post Staff Writer

The Sarmiento family never lost hope.

Hope that 9-year-old Sebastian would return to school. Hope that he’d be back on the soccer field. Hope that the cancer that left the boy frail and tired would go into remission.

“We want our kid to be cured,” Francisco Sarmiento, Sebastian’s father, said late last year.

Sebastian died Friday afternoon, surrounded by his extended family, after a 16-month battle with leukemia.

Sebastian’s story was featured in The Palm Beach Post’s Season to Share. The boy’s somber gaze from behind a surgical mask became one of the program’s most poignant images.

After reading about Sebastian, Wellington neighbors raised more than $1,000 to be used for sneakers, gas cards, games, DVDs and gift cards to Walmart, Target and Regal Cinemas. The Sarmientos’ mortgage and utilities were also paid for December and January.

In the past month, Sebastian and his family traveled to New York City for three days with the help of the Make-A-Wish Foundation.

“He wanted to go and see the Big Apple,” said Adriana Sarmiento, his mother.

They toured the Empire State Building, the Statue of Liberty and Rockefeller Center.

“It was good for him,” his mother said. “He was kind of tired, but he enjoyed it.”

The morning after the family returned to South Florida, Sebastian had a seizure. The doctors said his blood pressure was very high, his mother said.

He had another episode of high blood pressure just days before his death.

As his health deteriorated over the past month, Sebastian never gave up hope, his mother said. He was in need of a bone marrow transplant to live, which wasn’t possible unless the leukemia went into remission. It never did.

“He was expecting to get better and be able to come home,” she said. “It’s not fair. It’s not fair that a child like this had to suffer. He should have been protected from this.”

For the Sarmiento family, the only comfort comes from knowing that Sebastian wasn’t alone when he died, his mother said. He was surrounded by the people who loved him.

A funeral Mass will be held for Sebastian at 10:30 a.m. Monday at St. Rita Catholic Church in Wellington.