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Boy Gets New Liver and His Wish to Visit Disney World

October 28, 1998|JENNIFER KNIGHT | SPECIAL TO THE TIMES

SANTA PAULA — Flexing the padded muscles on his Spiderman suit, 8-year-old Rogelio Nunez Jr. felt invincible.

After all, the Santa Paula boy was fighting the battle of his life.

Five months ago, Rogelio lay dying in a UCLA hospital of liver failure brought on by hepatitis. While there, Rogelio dropped to 40 pounds. He lost his eyesight and hearing, and the treatments caused constant pain.

"Sometimes they would stick me all over," he said this week, contorting his face into a grimace.

But after a liver transplant and months at UCLA Medical Center, Rogelio is back at home--and looking forward to a trip to Disney World, thanks to the Make-A-Wish Foundation.

During Rogelio's recovery, his family kept a bedside vigil. His father stopped working and exhausted all his financial resources to be near him. The two now wear matching necklaces with a crucifix and anchor on them to remind them of their faith and mutual love for water.

"He wants to be just like me," said Rogelio Nunez Sr. "He likes to copy everything I do."

Although the younger Rogelio must take medicine for the rest of his life, there are good signs now. His sight and hearing were restored, and he has gained 10 pounds.

Despite this, his father still worries.

"You never know what's going to happen the next day," he said. "He might die."

In fact, rejection of the new liver is always possible. A simple drink of unfiltered water a month ago sent the boy back to the hospital for a week.

But for five days, the Nunez family will forget all that in Disney World.

The trip was conceived when June and Ed Lofton visited the Nunez family's three-room mobile home a few weeks ago. Rogelio had just returned from the hospital, where he had landed after hepatitis caused his liver to stop functioning. The boy contracted the disease during a family visit to Zacatecas, Mexico.

If he could have anything, the Simi Valley couple asked, what would it be?

Rogelio shut his eyes tight, smiled and made a wish--for he and his family to get away together.

On Thursday, Rogelio, his parents and his three sisters, ages 1 to 14, will fly to Disney World in Florida.

"We're a ray of hope for them," said June Lofton. She and her husband are wish granters--people who contribute time or money to help realize the wishes of children with life-threatening illnesses.

"This takes away from the needles and doctors," Lofton said. "We don't want to be a part of that, we want to be the happy part."

Every year, the nonprofit foundation grants the wishes of dozens of children, with the help of donations of money and frequent flier miles.

The only limit is that the wish must be within the United States.

On Monday evening, the Loftons arrived at the Nunez family home with a bag of goodies. When Rogelio saw his Spiderman suit, his face lit up.

"Is that for me?" he asked. "I'm gonna try it on."

Dressed as the comic-book hero, the boy sat patiently while June walked through instructions for the trip, which is worth about $3,000, Make-A-Wish officials said.

And sick as he is, Rogelio still thought of others.

"Are you cold?" he asked Ed Lofton.

"Here, sit down. Be comfortable," he told another guest.

When June brought out some paperwork, he mustered the strength to pick up a large lamp and place it on the table, so she would not strain her eyes.

And even as Rogelio contemplated his dream trip, he had one last wish for the doctors and nurses at UCLA Medical Center.

"Can you tell them something?" he said. "I want to say to them, 'Thanks to the doctors, I got another chance to live.' "

*

Staff writer Fred Alvarez and staff photographer Carlos Chavez contributed to this report.

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