Romeoville Man with Contagious Smile Battles Degenerative Disease

Brandon Regan may not have long to live, but the 25-year-old Romeoville man has no intention of wasting away. He recently spent a few minutes chatting and singing “The Thunder Rolls” over the phone with none other than country music legend Garth Brooks.

On Friday, he plans to see a Joliet Slammers baseball game with his extended family. On Sunday, he’ll get fastened into the side car of a motorcycle and take a little ride around the neighborhood. And, with a little help — well, all right, make that a lot of help — from his many Facebook friends, he hopes to achieve his biggest dream ever: to fly to Las Vegas and meet Brooks in person.

The obstacles that stand in his way are tremendous. Brandon suffers from degenerative cerebellum with ataxia of unknown origin. His father, Robert, described the diagnosis in layman’s terms.

“Basically,” Robert said, “doctors don’t really know much about it. They know it’s degenerative and that the cerebellum part of the brain is shrinking and will eventually detach from his spinal cord.”

“There’s nothing the doctors can do,” said Brandon’s stepmom, Cheri Regan.

Despite his condition, Brandon maintains a positive attitude.

“He has this contagious smile,” said Robert. “When he is so sick and can hardly keep his eyes open, he’ll look up at you and give you an ear-to-ear smile. He’s always trying to make other people feel better.

“I’m a biker, and I’ve seen some big and bad bikers warm up to him. He wants a hug. He wants a kiss. He loves everybody. He’s got this way about him that he just sucks you into his world.”

Brandon and his 28-year-old sister, Laura, both have the same degenerative condition, which controls walking, breathing, swallowing and eye movement. For most of their childhood, Laura experienced the more serious problems as a result of the disease.

“But Brandon got to the age of 18 and they sort of flipped,” said Robert. “Laura stopped having problems, but Brandon got far worse. It’s tough, but we never candy-coated it. We’ve always treated them like normal kids.”

Laura, who lives with the children’s mother, Kristine Hass, has difficulty walking and talking, but Brandon’s health continues to deteriorate.

“He used to be able to ride his bike, and we would go places,” said Cheri. “He always had a wide-based gait when he walked, but now he’s wheelchair-bound. The doctors said the disease is progressing at a fast rate.”

When the family moved to Romeoville in November 2010, Brandon helped pack and carry boxes into the new house. Today, just eight months later, he receives hospice care.

The siblings’ health issues continue to puzzle medical experts.

“As a matter of fact, doctors from Loyola took their case to a conference with 700 doctors to learn if anyone else had seen anything like this,” Robert said. “When Laura was first diagnosed, they thought it was seizure disorder. Then Brandon came along. They told us there’s a one in a million chance of having a child with this disorder, and then, with Brandon, they said there’s a one in 20 million chance of two children in a family having it.”

The challenges may seem daunting, but the Regans are not ones to complain. After a recent hospital stay for Brandon, Cheri set up a Facebook page expressing his dream for a “bunch of friends.”

“We were shooting for 100 friends,” said Robert. “By the end of the first day, we were over 1,000 and Facebook had already shut us down. After 15 days, he had 5,000 friends on his personal page and 1,200 on his fan page.”

Perhaps one of Brandon’s biggest fans is Brooks, who Cheri said was extremely polite when he phoned Brandon recently.

“He said, ‘This is Garth Brooks. May I please speak to Cheryl Regan?’ ” Cheri said. “I was so surprised. I was crying.”

Brandon, on the other hand, was flashing his familiar ear-to-ear smile.

“For days, no matter who came to see him, he’d say, ‘I spoke to Garth Brooks. I sang with Garth Brooks,’ ” said Cheri.

Robert and Cheri recorded the special occasion, which can be viewed at http://www.youtube.com/watch?v=0Hy6TXwPbzU.

“Garth got on the phone to talk to my husband, and he said that he would give anything to trade places with Brandon, but not in a million years would he trade places with Robert,” said Cheri.

As the Regans continue to care for Brandon, they appear realistic and hopeful at the same time.

“It’s part of life,” Robert said. “I was given a gift 25 years ago, and if it’s time to go, it’s time for him to go home.”

For now, the couple is considering holding a benefit for Brandon and would love to see folks from the community pour out their support by sending cards and other greetings to the young man with the contagious smile. Cards can be mailed to Brandon Regan c/o Cheryl Regan, P.O. Box 8283, Romeoville, IL 60446.

People can also check out Brandon on his Facebook fan page, https://www.facebook.com/groups/238122052884010.