Overcoming adversity

Tessa Campbell should be returning to high school along with her classmates next week.

Instead, the rising sophomore at Culpeper County High School will be recuperating in her Brandy Station home after the amputation of her right foot July 2 at Children’s National Medical Center in Washington, D.C.

Campbell, 15, suffers from spina bifida, a birth defect that typically occurs during the first trimester and involves the incomplete development of the spinal cord.

“Every time she grows taller, the nerves in her waist get impacted and make scar tissue. It’s kind of like slowly being paralyzed,” said her mother, Kim Toone.

Already standing at 5 feet, 9 inches tall, Campbell uses crutches or a wheelchair to get around. She also wears a brace on her left leg to support her weak ankle and was fitted for a prosthetic foot last week.

Campbell would like to have her artificial foot before returning to school in October.

“A year of my life is gone because I had to deal with this stupid foot,” the candid teenager said Tuesday. “I’m going to get right back out there and do what I love.”

Campbell beamed as she talked about someday returning to athletics.

“I love to play sports as long as it involves running and hitting something like a baseball or a soccer ball,” she said.

But before she’s able to run across the fields, Campbell faces an additional surgery. She’s scheduled to undergo another spine operation Sept. 8.

Of her 21 operations, Campbell has received eight spine surgeries, five tendon transfers on each foot and bladder surgeries, among others.

“The more surgeries you have on your spine, the more you risk getting spinal meningitis and the complications go up. It’s a risky surgery,” Toone said of her daughter’s upcoming spine procedure. “But if she doesn’t have her spine surgery, she’ll lose all of her function from the waist down and be in a wheelchair, and she doesn’t want to be in a wheelchair.”

With her new prosthetic foot, Toone said, her daughter will be able to drive, swim, water ski and participate in countless daily activities.

How it all started
In May 2009, Campbell was unaware of a deteriorating pressure sore growing on her right foot that had worsened over a week’s time. Because one of the symptoms of spina bifida includes paralysis, she was unable to feel any pain.

“It’s like a diabetic’s foot. You can’t feel the circulation in your feet. And you have to constantly check for pressure sores,” said Toone. “I thought she had the flu. She wasn’t acting well.

“When I pulled her sock off that night, she had a hole all the way through her foot and it was full of MRSA and gangrene. It was nasty.”

MRSA is a bacterial infection that’s dangerously resistant to some antibiotics, and gangrene is dead or dying body tissue.

Campbell’s right leg was placed in a cast for seven months to try to heal her foot. But the amputation was inevitable.

“She’s a real trooper,” said Toone.

Campbell’s post-secondary plans include studying marine biology in college. Meanwhile, getting to high school has been an ongoing challenge.

“She missed 81 days of school last year,” said Toone, adding that her daughter uses a tutor when she’s recovering at the rehabilitation hospital.

Culpeper County Public Schools also provides a homebound instructor for students who have to miss school due to medical reasons.

Expert opinion
According to the Spina Bifida Association, seven out of every 10,000 live births in the United States are affected with this disorder.

Doctors are uncertain about what causes spina bifida. They are, however, confident that it appears to originate from a combination of genetic and environmental risk factors, such as family history and folic acid deficiency.

Doctors recommend expectant mothers take folic acid vitamins daily to reduce the risk.

There’s no cure, but treatments can include surgery, medicine and physical therapy.

Dr. Mark F. Abel, chairman of the University of Virginia Department of Orthopaedics in Charlottesville, has not examined Campbell, but he provided a general opinion about the genetic disorder.

“It’s a difficult condition,” said Abel, a Lillian T. Pratt distinguished professor of orthopedic surgery. “The elements of paralysis vary. Since the spinal cord doesn’t work, they don’t feel. It’s not clear why it happens, but spina bifida development happens during the very earliest part of uterine development.”

According to Abel, who specializes in pediatric orthopaedics, there’s a great chance for patients with spina bifida to succeed in daily activities after surgery.

“Most patients participate in wheelchair sports,” Abel added. “The hope would be to get her back to the functional level prior to amputation.”

Mounting medical bills
Toone, who’s recently got married, is unable to work full time because she has to drive her daughter to weekly doctors appointments more than 70 miles away.

Toone does, however, work part time as an alcohol compliance officer at Jiffy Lube Live (formerly the Nissan Pavilion) in Bristow.

“I do what I can and I work when I can to get by,” said Toone, who had to empty her retirement savings accounts to pay for medical bills. “It’s a constant back and forth and spending money that I don’t have.”

Without Medicaid, Toone is unsure how she’d be able to manage. She couldn’t provide a total amount of how much she owes, but says it’s plenty — “I could (wall)paper a wall with all of the receipts that I have.”

Extreme Makeover: Brandy Station
When Tessa Campbell returns home for good, she’s going to need living space that’s wheelchair accessible. The family lives in an 80-year-old farmhouse in Brandy Station.

“It’s obviously not handicap accessible,” said her mother, Kim Toone.

Augustine Homes of Fredericksburg is willing to help. The residential construction company is donating some supplies and covering the cost of the architect to build a handicap-accessible addition.

“I’m also going to work to get our subcontractors and other subcontractors to help with materials and labor,” said the agency’s purchasing manager Lori Love, who has known Toone for more than 30 years. “That’s what friends do. They help friends in need, and they are truly in need of help.”

All American Street Rods of Gainesville sponsored a 50/50 raffle Aug. 7 at the National Harbor in Oxon Hill, Md., raising $1,000 toward the building permit.

“You do what you can, and this is something I’m capable of doing, so I am,” Love added.

An architect is currently drawing up plans for Campbell’s new living space.

The bathroom and a portion of the lower level will be modified with ramps and wider doors to accommodate Campbell’s wheelchair.

“It’s just a place where she can be since she can’t really get up and down the stairs because the stairs are narrow and there’s a turn,” Toone explained.

The addition will be located off of the home’s back porch.

Want to help?
If you’re able to help the family with medical bills or building supplies for a new wheelchair-accessible addition, donations can be made to the Tessa Campbell Fund, c/o Manassas Presbyterian Church, 8201 Ashton Ave., Manassas, Va, 20109 or call pastor Skip Ferguson at (703) 369-2058.