Copyright 2003 The Tribune Co. Publishes The Tampa Tribune
Tampa Tribune (Florida)
July 7, 2003, Monday, FINAL EDITION
SECTION: PASCO, Pg. 2
LENGTH: 942 words
HEADLINE: Medical Problems Besiege Family
BYLINE: JENNIFER STUBBS , Suncoast News correspondent

PALM HARBOR - Bobby Paolini thought he and his family had the perfect life.

He was a part-time college student, working toward a degree in business; his parents were happily married and were managers at successful restaurants; and he had two younger siblings still living at home.

Then in 2001, Bobby's mother, Helena, complained of pain in her left calf.

Ask Bobby, 24, whether he had any idea what was in store for him and his family and he would say it was beyond his wildest imagination.

Less than two years after she first complained of the pain, Helena, a former dancer with the "Disco Step-by-Step" television show in western New York, was bedridden.

Now 48, she was diagnosed in April 2001 with amyotrophic lateral sclerosis, the degenerative neuromuscular ailment also called Lou Gehrig's disease.

Bobby tries not to dwell on the hazy series of events of the past few years.

"I have to go with the flow every day and hope it all works out," he said.

Bobby left school and has devoted most of his time to taking care of his mother.

Both he and his father, Robert, 49, went through five weeks of vigorous training at Kindred Hospital Bay Area/ St. Petersburg to be able to administer respiratory therapy so they could bring Helena home after she underwent a tracheotomy in April 2002.

Robert works full time as a regional manager for Arigato Japanese Steak House. Bobby said he and his dad evenly split the workload.

Another Frightening Diagnosis

Bobby wasn't always so sure his father would be able to help.

On the same day in April 2001 that Bobby was told his mother's ALS diagnosis was confirmed, Robert gathered the family in the living room and said he had a brain tumor the size of a lemon.

"It was so overwhelming," Bobby said. "I couldn't even tell you what I was feeling that day."

By the time Robert had surgery four months later, Helena could barely hold up her head. Although surgeons appear to have succeeded in removing Robert's tumor, he is facing another medical problem: prostate cancer.

Helena's condition, meantime, continues to worsen.

"Right now about the only muscle that works in her whole body is her heart," Bobby said.

What makes things even more difficult, Bobby said, is he knows his mother is completely aware of everything around her. Although ALS paralyzes the body, the mind rarely is affected, leaving Helena, and the thousands of other Americans with ALS, prisoners in their own bodies.

According to the ALS Association Web site - www .alsa.org- people can expect to live from two to five years after their diagnosis. Little is known about the disease, which claims an estimated 5,000 people each year. That is exactly why the Paolinis had so much trouble in the beginning.

When her calf began to hurt, Helena did some research and decided she had foot drop, a type of leg pain thought to involve the peripheral or central nervous systems.

The family worked with various doctors and had braces fit for her leg. At that point, nobody had said a word about the possibility of ALS, Bobby said.

The Paolinis are now putting all their faith into the kind of care they have chosen for Helena: family care.

Bobby's older sister, Gina Kramer, visits Helena when she can. Younger sister Elena, 15, and brother, Anthony, 11, help Bobby with their mother.

In addition, the family has a lot of friends who make things a bit easier. Helena's best friend, Cheri Sommers of Boca Raton, has coordinated much of their fundraising.

"Helena is one of the most beautiful souls put on this earth," Sommers said. "It was very difficult handling all of this, but I realized I had to put all of my fears aside and do something to help them."

Robert said Sommers probably has raised up to $20,000 since 2001.

Her husband, Larry, also has been a big supporter. His employer, Miami Air Route Traffic Control Center, will sell tickets for Cheri's latest effort, drawings for lobster to run through August.

Winners in the once-a-week drawings will receive six 11/2-pound Maine lobsters and two bags of mussels. She must sell 100 tickets, however.

Sommers said the family can use all the help it can get. Robert's prostate cancer was diagnosed in May, and within the next month he will have to go in for treatment.

An Expensive Disease

Like most people with loved ones who are critically ill, bills are a big problem. According to the ALS Association, the annual cost of caring for someone in advanced stages of ALS can average $200,000 per year.

Robert said he cannot get outside help from any agency because Helena has a tracheotomy. This also causes insurance problems; it doesn't cover her home health care or her liquid nutrition.

The Paolinis want people to know that for now, fighting ALS is a cause that must be funded privately.

"Ours is an honest plea for any kind of help," Robert said. "We're reaching out to anyone who is willing."

Help doesn't necessarily mean financial or medical. Touch of Class Pet Groomer grooms the Paolinis' dog for free once a month.

Checks for the Hope For Helena Trust Fund can be sent to: 1638 Spottswood Circle, Palm Harbor FL 34683.

Tickets for the lobster drawings are $10 each. Send checks made out to the Hope For Helena Trust Fund, in care of Robert Paolini, to: Cheri Sommers, 2494 N.W. 66th Drive, Boca Raton FL 33496. Include a return stamped envelope with a mailing address for the tickets.

Anyone interested in helping the Paolini family can call (727) 786-0002 during the day. For information visit the Web site www.discostep bystep.com/helena_pa.htm