Illness Doesn’t Keep Boys From Being Boys

Devin used to be able to walk. Or, perhaps, he was almost able to walk.

He was a toddler then. Devin would struggle to his feet, leaning against a sofa. He didn’t walk very well or very far, but he managed a few steps.

Then, he couldn’t do even that. He couldn’t get to his feet.

Diane and David Hollinger had long feared that something was seriously wrong with their son, ever since the seizure he suffered two weeks after birth.

Devin’s development had been slow. At first, doctors thought he might have cerebral palsy. But when Devin was 3, a neurologist made another diagnosis: Your son has leukodystrophy, a progressive, degenerative disease of the nervous system, caused by a genetic disorder passed on by the mother. Mrs. Hollinger, the doctor said, you probably shouldn’t have any more children.

The doctor didn’t know that Diane Hollinger was already five months pregnant, with twins.

*

That was 10 years ago. The other day, Devin celebrated his 13th birthday with a party at College View School in Glendale, which serves students with disabilities. His twin brothers, Jason and Jordan, were there too.

Virtually paralyzed, the Hollinger boys are unable to speak, unable to communicate in the usual sense. But the people who know them best--their parents, their teachers--say they are happy boys. If you were to spend time with them, they say, you’d understand that they have their own way of smiling and laughing and fussing. They’re just boys, Diane says, like any other boys. It’s just that they can’t do as much as other children.

Step inside the front door of Diane’s Burbank home. Here in what otherwise would be the living room are a pair of empty hospital beds. This is the twins’ room. Diane smiles and offers greetings and guides you back to Devin’s room. He is awake in bed; his brothers lie on a sofa and love seat. On the TV is a video of “Beverly Hills Cop III.”

“They like action, adventure--anything noisy,” Diane said. “Boy stuff.” They also like wrestling, motorcycle racing and “Star Trek: Generations.”

On this morning, a nurse helps Diane with the boys. When they cough, the women insert a suction tube into their mouths to remove mucous. Swallowing has become so difficult that the twins, who used to be able to feed themselves, recently had operations to insert gastrostomy tubes that allow them to be fed directly into the stomach. Devin had his “G tube” inserted years before.

On the TV set, Eddie Murphy’s character is making a death-defying climb on an amusement park thrill ride to save some children in danger. It is impossible to know what Devin, Jason and Jordan are thinking.

Some doctors believe that, with leukodystrophy, the mental powers deteriorate along with the physical; the disease damages connections within the brain. It’s tempting to think of this as a kind of blessing. Perhaps the boys, suspended in mental infancy, can’t comprehend how badly they’ve been cheated by fate.

But Diane believes their mental powers are sharper than doctors suspect.

Yes, she said, there is communication. Sometimes.

Devin makes a sound like “uhhh.” She’ll ask him questions and take “uhhh” as a yes.

With his birthday coming up, she asked Devin if he wants to go for a ride. “Uhhh.” To the beach? Silence. To the park? Silence. To grandmother’s? “Uhhh.”

And sometimes Devin bites down hard on the suction tube. This may be defiance, Diane said, or it may be playfulness. “We call him ‘Jaws.’ ”

Diane says it took her years to accept her sons’ condition and the condition of her own life. She and her ex-husband, David, had carefully planned their lives. They had good jobs and had purchased a home two years before Devin’s birth. But their marriage had grown shaky before Devin’s diagnosis and the birth of the twins. The strain destroyed the marriage.

At first Diane took care of her kids full time, without help from nurses. “For years I was angry and bitter.” The teachers at College View School and an after-school program sponsored by Easter Seals helped her learn what music her sons liked and their favorite colors. She shows off a stack of finger paintings by her sons, made when they had more mobility.

“I was ashamed to say, I was so busy taking care of them I did not know my sons,” Diane recalls. “I told them I loved them, and I held them. But I didn’t even know them.” Their finger paintings “made me cry. I was so happy. . . . It was like a whole new world.”

Years have passed since Diane and her sons were first asked to appear on the Easter Seals Telethon. The first time, “I was furious. I said, ‘We’re not a circus act.’ . . . People said, no, no, it’s an opportunity for people to see how cute they are and that they aren’t miserable.”

Diane went on TV and discovered that she liked “showing the boys off.” She was proud of them and the life she has provided.

And, more recently, their father has become more active in the boys’ lives.

“It’s taken a lot of time to heal, to try to understand things,” said David Hollinger, a locomotive inspector for Southern Pacific. His health insurance and Medi-Cal cover the boys’ medical expenses. In an interview, David recalled how “devastating, really devastating” it was dealing with his sons’ affliction.

David, who became a born-again Christian two years ago, believes his sons have an understanding that is beyond the mental.

“I think there’s something deeper than seeing and hearing. There’s something there that reaches their souls. I think, in a way, their souls are recording this. . . . I think their souls, more than anything else, capture that I am there. They know who their father is.

“I’ve released them to God, for they are God’s children. . . . They will be in heaven no matter what, because of their situation.”

*

“My big boy’s a teenager!” Diane happily announced, fussing over Devin. She knows this is something of an accomplishment. From reading the newsletters from the United Leukodystrophy Foundation, Diane has learned that many victims of the condition die at a younger age. The memorial notices proved so depressing that Diane now tosses the newsletters in the trash.

Our understanding of leukodystrophy is far exceeded by our ignorance, said Dr. Michel Philippart, a pediatric neurologist at the UCLA Medical Center who has examined the Hollinger boys. Leukodystrophy was the disease depicted in the movie “Lorenzo’s Oil,” but there are variations in it. The medication that helped the boy in “Lorenzo’s Oil” doesn’t help the Hollingers.

Philippart says life expectancy is hard to gauge and depends on the quality of care. In 1967, he took on a patient who was said to have six months to live. “She turned 40 last summer.”

Diane hopes her boys will help us understand more. Last week, she and the twins flew to the National Institutes of Health in Bethesda, Md., to participate in tests. As the carrier of the gene, Diane underwent testing as well. They expect to return for more studies later in the year.

Devin stayed home with a nurse. When Diane called, the nurse put the phone to Devin’s ear.

Even over the phone, the nurse said, Devin knows his mother’s voice.

His eyes widen and his breathing becomes harder. And sometimes he says, “uhhh.”

Scott Harris’ column appears Tuesdays, Thursdays and Sundays. Readers may write to Harris at the Times Valley Edition, 20000 Prairie St., Chatsworth, CA 91311. Please include a phone number.