A Legacy of Love : Jacob Johnson was only 5 1/2 when he died of a rare disease. But his silent struggle had already touched--and changed--many lives.

There was a time when Lauren and Marshall Johnson waited for their only child to die.

Jacob was just over a year old then, a towhead with bottomless blue eyes. His head flopped over his neck. His legs took him nowhere. He could not sit. Even Jacob’s smiles, and tears, stayed trapped inside his soul. He was silent as a rag doll.

Leigh’s disease, a rare disorder of the central nervous system, had stolen nearly all of Jacob’s muscle control. Within months, or days, the medical experts said, the degenerative disease would vanquish his life.

Jacob had other plans.

Burdened with a body that no mortal could repair, Jacob lived until last month, 5 1/2 years after he was born. And his parents say he still lives inside the many people whose lives he has bettered, those who have learned to cherish the simple tenet of unconditional love.

“Jacob would speak to you if you would take the time to stop and listen,” Lauren says. “It was something that you would reach within yourself and find.”

Neither Lauren nor Marshall Johnson uses the word “die” when they speak of their son. Jacob, they say, has passed--to a place where he runs and laughs and where there is no reason for tears.

“The more we gave to Jacob, the more we got back,” Lauren says. “He taught us about kindness and long-suffering and love.”

“Your heart changes,” Marshall says. “I’m not the person I was five years ago.”

The Johnsons’ odyssey began in an unexceptional way. They were a young couple who married 10 years ago in June. Today, Marshall, 35, is an architectural designer, and Lauren, 30, a medical transcriber. They moved into their condominium in Rancho Santa Margarita because the area seemed an ideal place to raise what they assumed would be healthy kids.

When Jacob was born, they basked in the admiring coos of family and friends.

But medical disaster soon intervened. Jacob’s developmental milestones never came or were reversed. At three weeks, he would raise his head and scan the room with dancing eyes. But, by the time he was 6 months old, even his baby tears stopped.

The Johnsons began researching their son’s unfathomable condition largely on their own.

Leigh’s, which the Johnsons now know is a mitochondrial disease that was transmitted through Lauren’s genes, was finally diagnosed in January 1992 by a specialist in New York.

The Johnsons brought their son home, mentally prepared to make his final days as comfortable as they could. Emotionally, however, they reeled. In a story in The Times, they wondered if any other family had similar stumbles through the medical maze.

People reached back.

Strangers sent letters, cards and books; they called on the phone. A painter presented the couple with a watercolor portrait that he had modeled on Jacob’s photograph in The Times. Jacob and his parents responded by living with everything they could. The Johnsons joined with other parents to form a nonprofit organization, the United Mitochondrial Disease Foundation of California. They drew even closer to God.

Aside from the obvious effects of Leigh’s, Jacob’s general health was good.

“We swore there were times when we’d be in the room and not paying attention to him and he would make a noise, like ‘Look at me!!’ ” Marshall says.

At UC San Diego Medical Center, pediatric neurologist Richard Haas took to introducing his miraculous patient by telling his medical students, “This is Jacob. He’s not supposed to be with us.”

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The larger, shadowy question of quality of life was taking care of itself.

Jacob, now being fed through a tube in his stomach, was in no apparent pain. Lauren and Marshall could sense his comfort when they cradled him in their arms. Jacob traveled in a flexible wheelchair that propped up his back.

The round-the-clock care their son demanded was a price the Johnsons say they willingly paid. “It makes you see life differently,” Lauren says. “And not get hung up on the fluff.”

Lauren took a job in 1994, working nights until 2:30 a.m., so her husband could take over Jacob’s care when he came home from work.

“There were stresses,” she says.

And negatives, he adds, “but overall, it made us totally different people. Better people.”

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The parents could not really prepare themselves for what they knew was the inevitably of Jacob’s early death. They’d already decided that no extraordinary means should be used to keep him alive.

Still, the life-threatening onset of a mild pneumonia took them by surprise. Lauren had taken Jacob to a meeting at Mission Hospital Regional Medical Center, where she works. The 21-month-old foster child the couple had recently begun caring for was with her too.

When Lauren noticed Jacob’s labored breathing, she took him to his pediatrician downstairs. The doctor, alarmed by the blue tinge of Jacob’s skin, gave Lauren a choice: admit her son to the hospital or take him home to die.

“In the back of my mind, I thought maybe with some more antibiotics and oxygen, he’d pull through,” Lauren says.

Instead, she watched her son fight for breath even as a machine pumped oxygen into his lungs.

“I noticed that his little fingernails had turned blue,” she says now, her eyes glistening with tears. “It’s like we were all working to keep him alive. But it just got to a point where he was struggling so much. So I said, ‘Just let him go.’ That was the hard part.”

The nurses removed Jacob’s oxygen mask, put him in his mother’s arms and left the room. “He just stopped breathing,” Lauren says.

Marshall, who had arrived at the hospital from work, phoned Haas. They had already arranged to donate Jacob’s brain, kidney, liver and heart for research on Leigh’s.

“It was a very great gift that the parents have given us,” Haas says.

The following days went fast. Saddleback Community Church, where the Johnsons volunteer in the nursery and office, arranged a “celebration service” that was attended by 200 people. Marshall’s boss paid for a catered reception. A chaplain at Mission Hospital intervened on the Johnsons’ behalf to allow Jacob to be buried in the Catholic Holy Sepulcher cemetery in Orange.

The cemetery had special meaning to Marshall, who used to fish nearby as a child growing up in Villa Park. “Who knew that someday I would be burying my son there,” he says.

“I think I’ve changed more since he’s left me,” Lauren says of her son. “Now I realize the impact he had on other people. I want to live his legacy. I see the fullness and richness he gave us. I would hope I can continue that.”