A long way for Luc: Clinton boy faces daunting health crisis

Seven-year-old Luc Gandarias of Clinton is taking a big swing at the wicked curveball life has tossed at him. “His positive outlook’s amazing,” said Rich Bacigalupi of Langley, who knows Luc’s family well. “He always has a smile when he’s out in public.” “He’s got a lot of fight in him,” agreed Luc’s mother, Jennifer Gandarias. “He’s happy to be with his buddies and not on the couch screaming with pain.”

Seven-year-old Luc Gandarias of Clinton is taking a big swing at the wicked curveball life has tossed at him.

“His positive outlook’s amazing,” said Rich Bacigalupi of Langley, who knows Luc’s family well. “He always has a smile when he’s out in public.”

“He’s got a lot of fight in him,” agreed Luc’s mother, Jennifer Gandarias. “He’s happy to be with his buddies and not on the couch screaming with pain.”

Luc was a typically energetic grade-schooler until last May, when a baffling series of headaches escalated into a health crisis that has left his family reeling and their lives changed forever.

“They started out as normal headaches, and in two weeks became 12-to-15-hour screaming sessions,” his mother said Monday.

Successive diagnoses through the summer at Children’s Hospital and Regional Medical Center in Seattle began with migraines and ended with the discovery of a large growth in a delicate area near his inner right ear, Gandarias said. Surgery was scheduled for late summer.

But as the family awaited the surgery, Luc’s parents noticed he was becoming clumsy and walking into the furniture and the walls. His parents figured it was due to pain medication, but were concerned enough about his vision to return quickly to Children’s.

Luc was admitted the same day, Sept. 9. Tests determined that pressure on his cranial and spinal areas were 10 times more than normal.

An emergency shunt was planted to relieve the pressure, later replaced by an internal shunt. Meanwhile, a mastoidectomy determined that Luc was suffering from a buildup of liquid on the brain.

But the extreme pressure throughout the summer had caused a 60-percent hearing loss in Luc’s right ear, and severely diminished his eyesight, his mother said. He’s virtually blind in his right eye, and sees only shadows with his left.

“You have to get three inches from his face before he’ll see you, and he still can’t see your eyes,” Gandarias said. “He plays a good game. You look at him and he looks like the same old Luc. But you can tell he’s trying to figure it out.”

Since coming home from the hospital, Luc has adjusted well, under the circumstances. He’s off his medications, and has returned afternoons to his second-grade classroom at South Whidbey Elementary School.

“He’s frustrated it’s not full-time, but he’s happy to be back with his friends,” Gandarias said. She said Luc will need to learn Braille, and there will be many other adjustments when it comes to his education and his getting along in life.

She said Luc is fortunate to have stored up visual memory of the boundaries of his life before his eyesight failed. She said it would probably take “a miracle” for Luc to regain his sight.

“We’re very happy our boy is alive,” Gandarias said.

Meanwhile, the adjustments facing the family are enormous.

“There’s a lot we have to deal with,” Gandarias said. “There’s not a clear path on what we’re supposed to do.”

Gandarias teaches American literature to ninth- and 11th-graders at South Whidbey High School. Before that, she taught third- and fourth-graders at South Whidbey Intermediate School.

Luc’s father, Frank, has been in management and automotive sales on the island, and is currently setting up a new business.

The couple moved to Whidbey in 1993 from Seattle.

They also have a 4-year-old son, Gabriel, for whom they are trying to maintain a normal life while meeting Luc’s emerging needs.

“Really, he just wants his brother back to wrestle and play with,” Gandarias said of Gabriel. “Everyone’s adjusting the best they can. We’re trying to find some sort of rhythm in the family, so we fit in and feel comfortable. We’re just trying to get by.”

Gandarias said Luc appears to be ready for the battle ahead.

“He’s always been an upbeat kid,” she said.

“But he never wants to go back to the hospital again,” she added. “He’s pretty much done with that place.”

Gandarias thanked the many members of the community who have helped her family so far, doing chores, providing meals and contributing in other ways.

“We appreciate all the people pulling for us,” she said. “It makes each day bearable.”

“We love our community,” she added. “It’s hard to be on the other end of something like this.”

There’s more in store from friends and neighbors.

The congregation at Trinity Lutheran Church in Freeland, where the Gandariases are members, has planned a fundraiser

for the family from 4 to 8 p.m. Sunday, Oct. 17 at the church.

The event will be a free square-dance party with caller and lessons, and baked potatoes, chili and refreshments. Tax-deductible donations can be made at the door, or by mailing them to Gandarias Fundraiser, Trinity Lutheran Church, PO Box 97, Freeland, 98249.

Bacigalupi, who helped to organize the event sponsored by the South Whidbey school community and the church, said the Gandariases, and indeed any family in their situation, are more than deserving of the efforts being made on their behalf.

“They’re doing the best they can,” Bacigalupi said. “Their life is a lot harder than they’re letting the world see.”

As for Luc himself, he added: “He’s such a strong kid. He’s hopeful, and so are we, that a miracle will happen.”