All About Multiple Sclerosis

More MS news articles for December 2003

Donated getaways give caregivers a needed break

http://www.miami.com/mld/miamiherald/7373724.htm

Sat, Nov. 29, 2003
Connie Prater
The Miami Herald
Lake Wales

Cousins David Vega Jr. and Nelson Lopez are inseparable. They play ball together, laugh at each other's antics -- and go to chemotherapy treatments together.

David, who has leukemia, is 7, and 6-year-old Nelson is a key part of his support.

"He prays for him; goes to chemo sessions with him and knows about all his treatment," said David's mother, Dimas Diaz, of Fort Lauderdale.

Deliver the Dream founder Pat Moran, the CEO of Deerfield Beach-based JM Family Enterprises, had children like Nelson in mind when she designed the weekend getaways for families of those facing serious illness.

David and Nelson's family joined 10 others in Central Florida last week for a Deliver the Dream weekend. The families shared a common bond: All have children battling leukemia, non-Hodgkin's lymphoma or brain tumors. And all were stressed from piecing together lives amid doctors visits and chemo sessions.

While many retreat programs focus on the patient, Deliver the Dream includes caregivers or those in the patient's immediate circle: parents, grandparents, siblings, cousins, friends.

"Everyone needed that -- a break to get away," said Diaz, who took her daughter Tatyana, 3, niece Cynthia, 11, and Diaz's boyfriend Anthony Gonzalez on the trip with Nelson and David.

"The forgotten victims of cancer are the siblings," said Dr. Rudolph Roskos, a pediatric hematologist/oncologist at Chris Evert Children's Hospital at Broward General Medical Center in Fort Lauderdale. "When one child is ill, the family has to focus on that child. The other children often get left out."

FREE OF CHARGE

The families are treated free of charge to a three-day respite at Westgate River Ranch, a 1,700-acre resort near Lake Wales. They travel up by bus Thursday afternoon and return mid-day Sunday.

Parents get to relax (they bring in a massage therapist and provide day care) and bond with other families battling similar conditions. Horseback riding, a petting farm, hay rides, marshmallow roasts, swimming, airboat rides, arts and crafts and miniature golf are among the activities.

"They unwind, they come out of their shells. Some weep," said Matt Pieper, the program's executive director.

Teresa Hugo of Coral Springs took her mother, June White, and three children: son Jon, 10, daughter, Kristen, 13, and 4-year-old Catherine, who has leukemia. "I'm a single mom with three kids and when my daughter came down with leukemia it seemed like the world toppled. I could never be able to take my kids on a trip like that."

The best part of the trip: "Getting to know all the people and seeing my daughter have a good time . . . She's 4 chronologically, but with everything she's been through she's older than 4."

Janet Erlick, executive artistic director of the Fort Lauderdale Children's Theatre, leads two groups in a rollicking fantasy play complete with costumes and song -- "giving everyone a chance to just play together because so much of this is soooooo serious."

And through the play and laughter and musical drumming, a different kind of healing happens.

Travis Hamel, 14, comes out of his usual silence to explain the meaning of an eight-by-eight-inch quilt square that he designed in the Friday afternoon art class. A photo of five-time Tour de France champion Lance Armstrong is glued to the lower right corner. The words, "The Ultimate Story of Survival," are prominent on the swatch.

Travis says he's inspired by Armstrong, who battled testicular cancer and won.

"Have hope," says the teen, who's also battling cancer. "You can survive whatever you have."

Deliver the Dream, a not-for-profit group, sponsored its first retreat in October 2002 and has hosted nearly 400 families from across the Southeast. Previous groups have included those with sickle cell disease, multiple sclerosis, breast cancer, autism and those who've lost parents or children to serious illness.

There were 10 retreats this year; another 15 are planned for next year. Families must be referred for the retreats by hospitals or hospice agencies.

Stephen Knapp went to the multiple sclerosis family retreat in January with his wife and two daughters. The 54-year-old risk and facility manager from Boca Raton was diagnosed in September 2002 with MS, which destroys neurons in the brain and can cause episodes of blindness, paralysis and muscle spasms.

"The most meaningful part of it for me was when all the MS people sat in a room and each one just told their individual story about how MS impacted their lives," said Knapp, a former golf professional who walks with a cane and can no longer maneuver on the links the way he once did. "It really opened your eyes to how really devastating the disease is."

HOPES OF EXPANSION

Moran said she wants to expand the program by finding a permanent retreat site to host a larger number of families in need.

"The stress of coping with a serious illness can tear families apart," Moran said. "Deliver the Dream gives families who are coping with crisis the chance to have fun, laugh, talk, and just be kids and families again."

Heather Ann Quinn, 18, of Boca Raton, was the oldest of the children at this retreat. She was diagnosed with a brain tumor two years ago. She walks with a cane, has some visual impairment and often doesn't have the strength to do the things other girls her age do. But when Heather saw children like David Vega or Catherine Hugo fearlessly tackle rock climbing walls and horseback riding, she had a revelation.

"I was happy to see them running around and playing like nothing was wrong with them," she said. "After seeing all these kids, they changed my mind about doing stuff."

Before the retreat last weekend, many only knew each other from the waiting rooms or hallways at Chris Evert. Afterward, real friendships emerge.

The bus ride back home to Fort Lauderdale is alive with chatter and laughter, sharing memories. "It went by so fast," Teresa Hugo said. "We were all crying when we left."

Added Dr. Roskos, who saw several patients the day after they returned: "The kids had a great time, but I think the parents had a better time. Some of the worry lines are gone and some of the faces are a bit brighter."
 

Copyright © 2003, The Miami Herald