Daughter races to raise money for father's illness
March 7, 2010 at 11:05 p.m.
Updated March 7, 2010 at 9:08 p.m.
Bailey Fox, a spunky, freckled 11-year-old, wanted to run a 5K to raise money to cure her father's disease.
Instead, she walked the race Sunday, but was satisfied with each step.
More than 200 runners, walkers, strollers and rollers turned out for Victoria's first event to raise money for amyotrophic lateral sclerosis Sunday afternoon at Riverside Park. ALS, a terminal motor neuron disease, affects three Victorians, including Craig Fox.
Bailey was surprised and pleased by the day's turnout.
"It means a lot actually," she said, "because of my dad."
All proceeds benefited the ALS Therapy Development Institute, a nonprofit group that is one of few researching a cure for the disease.
Bailey and her 15-year-old brother, Tanner, have been their father's primary caregivers throughout the past few years. Bailey's experience is speckled with the frustration of straddling childhood and teen years while caring for her father during his battle with ALS.
A daughter's story
Pictures of teenage hearthrobs plaster the walls of Bailey's new room.
A Twilight-themed calendar hangs above her nightstand. A picture of Jason Bieber, a 16-year-old pop singer, has a phrase written in marker above his head.
"Bailey owns. . ." it reads, with an arrow pointing to his young face.
"His picture is wet from me kissing it," she said, playfully.
Bailey's room is zebra, zebra, zebra. Her sheets, hair ribbons and jacket are covered with the black-and-white pattern.
As the youngest member of the Fox family, Bailey is not the typical pre-teen.
When she was 7, she lost her mother, Nancy, to heart disease. Two years ago, she learned her father had ALS. At age 11, she moved from her childhood home and in with her retired grandparents to help care for her father.
Bailey's tween mind flutters from profound wisdom to childish thought.
"I really hate to see people not understand what it is," she said, referring to the disease. "I want them to know that people are out there suffering with this disease, and it's not like there's only one person with it, and that person is famous."
"Of course, I'm famous," she said, smirking.
Children as caregivers
Bailey's experience as a caregiver is one shared by children nationwide.
In a 2005 study by the National Alliance for Caregivers, about 1.4 million children are caregivers. About 400,00 of those are under the age of 11.
Before moving in with her grandparents, Bailey and her brother did everything for their father. Before school they would dress him and cook meals. During the week, they washed clothes and shopped for groceries.
The move has eased their load, but the frustration still surfaces.
"Yeah I get frustrated ... sometimes I get aggravated, sometimes I have an attitude, but that's normal," Bailey said.
She still helps her dad dress in the mornings and hand-feeds him at dinner.
"He gets frustrated because he tries and tries to do it himself, but he knows he can't," she said.
Craig Fox hopes his children can continue focusing on just being kids.
"I keep on telling them that their job is to do the little things - their own little things," Fox said. "Their school work. Little stuff. They contribute like cleaning the rooms."
Psychologically, Bailey still grapples with feelings about her mother, although she no longer cries for her loss.
A picture of her mother, Nancy Fox, hangs high on her wall in a zebra-print frame. It's visible from any part of the room.
The children attend a support group meeting for ALS caregivers about once a month, but nothing addresses specifically the need for children, who are affected differently than adult caregivers.
"Children, they are little adults and they don't always know how to deal with things," said Rebecca Axline, a clinical social worker with Methodist Neurological Institute in Houston.
Children like Bailey and Tanner run the risk of being "parentified," she said.
"They think they're adults," she said. "They start making decisions as if they're adults, but they're not really at a mature level where they can do that."
Bailey is heavily involved in school activities, volunteers in her church nursery and excels in her schoolwork.
Axline believes it's healthy for her to be involved to keep her experience as a caregiver balanced and help her develop resilience. But her experiences tread a fine line of being harmful.
"There can be really positive outcomes if it's done in a balanced way," she said. "But it also has the potential for it to have a negative outcome if there's not that support there. So it can go from wonderful memories of her father and the care she was able to give him and develop resiliency, or it can have a negative outcome and she can feel a loss of childhood."
Bailey's wants are much the same as any 11-year-old. She loves shopping and lately has been focused on who she'll invite to her birthday slumber party.
Her biggest wish is simple.
"I just wish it went away," she said, leaning back into her zebra bed sheets. "Like you took a pill and bam! It's gone. Like a snap of a finger."
The orphan disease
Making Bailey's wish come true would require an overhaul of funding and awareness, advocates say.
"I wish that we could say if we raise $100 million we could get ahead of this disease, but the bottom line is we have to have people working on it and working on it from all different directions," said Patrick Callihan, executive director of the ALS Association of South Texas.
The group lobbies at the national level. Because of their efforts, the Department of Veterans Affairs deemed ALS a service-related disorder because veterans are twice as likely to develop the disease. The association has committed $48 million toward ALS research during the past decade. But the battle for finding a cure, like any disease, is more about finding the funds.
ALS is what advocates call an "orphan disease." It affects such a small population (less than 1 percent in the U.S.) that funding is often hard to secure from investors trying to stretch their dollars.
"If your target audience is so small, investing that kind of money on that kind of therapy just doesn't provide a return on investment," said Lou Kobbs, Southeast regional director of the ALS Therapy Development Institute.
The group's latest research involves a mouse model system. Scientists compare two mice, one with ALS and another without the disease, map their genes and mark any differences in genes and proteins to see how ALS affects the body.
The research is extremely costly, but Kobbs is hopeful.
"I'm a firm believer that Americans are giving people. They do want to help, they just need to understand our story," he said. "I do believe that the disease is curable, but it really is a matter of money."
Hope for a cure
During Craig Fox's last steps at Sunday's race, he could barely hold his head up. In the two years since he was diagnosed, the disease has ravaged his muscles.
Tanner lifted his father's chin as he crossed the finish line. The family rushed to wrap a soft brace designed around his neck.
"I'm thrilled that I made it," Fox said after he found a seat. "I didn't think I was going to make it."
Sunday's race meant more than raising money to Bailey. It meant seeing her father happy.
"It makes me feel like he's not really struggling with stuff," she said while sipping a Coke after the race.
Tanner, who also walked the race, agreed with Bailey.
"Anything that'll get my dad back to the way he was or make him live longer is good for me," Tanner said.
Bill Hassel and Carolyn Shimek, Victorians who also have the disease, cheered on participants at the finish line.
"I think and hope it will raise awareness more in the community," Shimek said with the help of her husband, Mike.
But the highlight of the day for Bailey was smiles.
"Seeing Pastor Bill and seeing that he has a smile on his face and seeing Carolyn and how she always has a smile on her face," she said. "And, of course, Dad, he always has a grin, not a smile."
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