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TRYING TO GET BACK ON HER FEET

THE BALTIMORE SUN

By her late 20s, Perneita Farrar seemed to have overcome many of her life's earlier struggles. An unwed mother at 16, Farrar went on to graduate from the University of Maryland with a degree in public health and a minor in biology. She was working at Montgomery General Hospital in Olney, managing the health education and community outreach departments. On the side, Farrar worked as a health educator for Kaiser Permanente.

But for Farrar, neither her educational background nor her professional experience prepared her for what has become a life-changing battle with lupus.

Diagnosed with the autoimmune disease in 1999, Farrar recalled going to the emergency room at Montgomery General Hospital with acute stomach pain one day in January 2004 and being told she needed emergency surgery to stop internal bleeding. After surgery, the pain persisted for months, and Farrar underwent a second surgery in August of that year to clean out some scar tissue.

"My body was not able to recover from back-to-back surgeries, and my immune system started to attack my body," she said. "I started going downhill."

Farrar's physical condition quickly deteriorated. She lost nearly 40 pounds. She developed bladder problems, which often happens with those suffering from lupus. She began falling in public places. In April 2005, friends found Farrar at her home in Odenton "totally unresponsive."

They took her to the University of Maryland Medical Center in Baltimore, where she went into a coma. Several major organs failed. When she woke up two weeks later, Farrar was told by doctors that she would never walk again because of the damage lupus had done to her spinal cord.

Four years later, after seven more surgeries and more than 2 1/2 years in hospitals and nursing homes, Farrar, who is now 36, is on a slow but increasingly steady road that she hopes will lead to a full recovery. Though the odds of becoming fully ambulatory are still against her, "she's not going to accept anything less," said Ellicott City rheumatologist Stephen George, who has treated Farrar for two years.

Living on her own in a wheelchair-accessible townhouse in Elkridge, nearing completion of her master's degree in education at her alma mater, Farrar said that George has told her that she has become a "poster child" for living productively with a lupus-related spinal cord injury known as transverse myelitis.

Still unable to get around without either a motorized wheelchair or walker, Farrar will take another step in her recovery this week.

At a recent pancake breakfast at a local Applebee's restaurant, Farrar raised a little over $2,000 to help defray the cost of a 10-day trip to Southern California, where she will receive intensive physical therapy as part of Project Walk. She will also celebrate her 37th birthday there Monday and spend part of the day in the audience watching the "Dr. Phil" show, which was part of her daily routine when she was in a nursing home.

The Project Walk program includes three hours each day of physical therapy, compared with the one-hour sessions she receives three times a week in Maryland. The California program is designed to get those with spinal cord injuries out of their wheelchairs, as opposed to more traditional programs that help patients "adapt, rather [than] recover," according to Kristin Raymond, one of Farrar's therapists at Central Maryland Rehabilitation in Columbia.

"Their goal is to get people [with spinal cord injuries] up walking by re-educating the central nervous system," said Farrar, who is making the trip to the West Coast with her sister, Tonya Morgan.

George, who heads the pediatric rheumatology department at the University of Maryland, said that Farrar's lupus "is entirely under control" and that she has gained increased mobility and strength in her legs.

"She has forced things in her favor," George said.

Along with receiving proper medical care from George after years of neglect, Farrar's road took a significant turn when she met the Rev. Larry Walker of the Celebration Church in Columbia in the summer of 2008.

With the help of Walker and church members, who became part of Farrar's expanding support group, she was able to battle the depression that seemed to overwhelm her at times and was, she acknowledges now, "my biggest disability." She became the leader in the church's small-group ministry and volunteered in a local Big Brothers and Big Sisters program. She went back to school.

Once isolated and alienated from even her closest family members, Farrar slowly began to integrate with others. Much of her life began to revolve around the church.

"I pretty much blossomed there," she said of the nondenominational church. "It was a big part of my recovery."

Walker has seen that growth firsthand, from the day he noticed Farrar waiting near the bus that had let her off for a noon service one Sunday in the summer of 2008. Walker said that Farrar was content to let those coming out of the 10 a.m. service disperse, but he persuaded her to maneuver her wheelchair around the crowd.

"When she came here, she was broken and alone," Walker said. "The only thing she had was God living inside of her."

A few months later, Farrar confided to him that doctors and her family had basically given her up for dead. When she moved into her apartment, all she had was a hospital bed and a motorized wheelchair. She was receiving around-the-clock care.

"God had a different story for her," Walker said. "She knows she's been given a second chance at life."

Her family, including her son, now 21, is again part of that life. Morgan, a paralegal who is two years older than her sister, said that the estrangement was a combination of Farrar being "so depressed that she pushed us away, and we stepped away ourselves." Added Morgan, "It took me a while to understand, but now we're back to where we were before."

Morgan said that Farrar's determination has motivated her to go back and get an undergraduate degree herself.

"She's inspired all of us; throughout all this, she's getting her master's," said Morgan.

With the help of a small group of church members, including a couple who built a portable ramp so Farrar could attend meetings at the members' houses, Farrar's emotional and spiritual recovery has often outpaced her physical recovery, but she is starting to see significant progress there too.

Initially able to walk only five feet with her arms draped over parallel bars, Farrar now can use a walker to go more than 100 feet in a straight line with the help of custom-designed ankle foot orthoses that keep drag her from dragging her toes. She is also able to transfer more easily from her motorized wheelchair into a wheelchair at the rehabilitation center so she can be strapped into a harness needed when walking on a treadmill.

Lauren Geisbert, a physical therapist who along with Raymond has overseen Farrar's rehabilitation, said that Farrar's muscles were in such a state of atrophy after being bedridden that her legs were in constant spasm, making it painful for Farrar to do normal activities such as sleep.

"It was one of the worst cases we had ever seen," Geisbert said. "She's really come a long way."

Farrar now receives home care at the beginning and end of her day. She has a long way to go to reach her goal. But she recently passed the Motor Vehicle Administration test for wheelchair-accessible vehicles and now hopes to raise enough funds to pay for a wheelchair-accessible van..

Raymond said that Farrar, an admitted shopaholic, wants to walk across the stage at her graduation at the University of Maryland University College ceremony next May "in her high heels."

Added Raymond, "She has completely amazed me."

What shocked Geisbert was how quickly Farrar has progressed after she spent five weeks at Johns Hopkins Hospital last spring when complications developed after surgery for a digestive disorder. While most with Farrar's affliction never become fully ambulatory, her friends and those involved in her rehabilitation won't count her out.

"She's more motivated than most people," said Geisbert.

Said Farrar, "I have no doubt I will walk again."

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