A Special Day : Wish Foundation Gives Boys Who Suffer From ‘Lorenzo’s Oil’ Disease a Trip to Beach

No one can say for sure what 10-year-old Jason Hollinger was thinking when he took his first dunk in the ocean Saturday. Like his two brothers, he suffers from a rare neurological disorder that has left him almost paralyzed, unable to eat, walk or speak.

But as the Burbank boy sat cradled in his nurse’s lap clutching the fistful of sand she had placed there, a wave tumbled over his thin legs and into his face.

Jason’s eyes widened. And then, with the water still lapping at his toes, his lips parted into . . . a smile?

“Look, he loves it,” crowed Diane Hollinger, the boy’s mother. She was busy tending her oldest and most severely disabled son, 13-year-old Devin, a few feet away. “Boy, I told you you were going to get into that water one day, didn’t I?”

While the sights, smells and sounds of a day at the beach are joys that many Southern Californians learn to take for granted, the Hollinger family’s Labor Day weekend trip to an oceanfront resort was nothing less than an exhilarating--but exhausting--triumph.

The Hollinger boys, Devin and twins Jordan and Jason, have leukodystrophy, the degenerative and usually fatal disease of the nervous system depicted in the movie “Lorenzo’s Oil.”

Leukodystrophy is caused by a genetic disorder passed on by the mother, often to more than one child in the same family. It attacks the brain and spinal cord, gradually disabling.

As a toddler, Devin nearly learned to walk, but the disease cut short his development.

He was diagnosed with leukodystrophy at 3, when Diane Hollinger was five months pregnant with the twins, who showed signs of illness soon after birth.

Although they had been to the shore before, the brothers’ visits up until Saturday ended on a grassy bluff overlooking the beach. The stroller-style wheelchairs the brothers use cannot traverse the sand, said Diane Hollinger, 43.

At the request of the Make-a-Wish Foundation, which arranges memorable experiences for children with life-threatening illnesses, state lifeguards in Ventura County brought three specially designed sand-traction wheelchairs to the Mandalay Beach Resort. The luxury hotel donated three suites--one each for the boys, their mother and their nurses--for the weekend.

“They know we are here. They can’t walk and talk, but they know,” Diane Hollinger said. “There was such a look of peace on their faces when I explained we would be here for a couple of days.”

The boys are not strong enough to sit up by themselves so their mother and nurses buckled them into their car seats and strapped the car seats to the special wheelchairs for the bumpy ride to the water’s edge. The Sand Chair has large, doughnut-shaped rubber wheels that glide over rather than sink into the sand, said Craig Sap, one of three lifeguards who assisted the family.

At the water’s edge, the mother hoisted Devin, all of 120 pounds in his car seat, and plunked him down in the wet sand. The first gentle waves buried his curled toes in sand. The boy’s eyes closed until a large wave caught everyone off guard and soaked both him and the seat.

One of his nurses, Nancy Koch, rushed over with a portable suction device to draw seawater out of Devin’s mouth.

“It’s OK,” Diane Hollinger soothed, gently brushing sand from the boy’s face. “I want them to feel the water.”

Within a minute, Devin’s eyes were shut again.

Jordan, as it turned out, did not like the beach as much as his brothers. Sitting in nurse Fantasia Owens’ arms, he quietly whined and moaned until he was placed back in his seat.

“You’ll get used to it, precious,” Hollinger said. “But if you don’t like it, you be yourself.”

It took Diane Hollinger and two nurses about seven hours to pack for the long weekend. In addition to clothes, diapers, car seats, thermometers, medications, stethoscopes, blood pressure gauges and wheelchairs, they had to pack the suctioning machines that keep the boys’ lungs clear and two cases of the processed food that is pumped directly into their stomachs.

“If we forget certain things, we can’t just run to the store and buy it. We are like a traveling hospital,” Diane Hollinger said.

After checking into the hotel Friday afternoon, the crew was exhausted. The adults relaxed with a bottle of champagne, take-out Chinese food and a cake.

The boys watched cable television. Diane Hollinger, a divorced secretary who shares a Burbank home with the boys, their round-the-clock nurses and the often noisy medical equipment, said the night she spent in her own suite was the first restful one she’s had in who knows how long.

Hollinger said she initially felt guilty about asking the Make-a-Wish Foundation to do something for her family. She worried about taking charity, that people would think the trip was for her, not the boys. But after seeing the peaceful expressions on their faces--or at least Jason’s and Devin’s faces--her worries evaporated.

“I’m not sure how the boys feel, but to me the beach is meditative. The ocean breeze and the air, it’s healing for anyone. It’s a free gift in life for everyone to enjoy,” she said.