NEWS

Teen marshals forces against rare illness

Jean Kozubowski Salina
Journal
Rachael Bradshaw, 14, of Delphos, holds a plush turtle, which represents Guillain-Barre Syndrome, or GBS. GBS also are the initials of "Getting Better Slowly," the motto of those who suffer with the condition, according to Rachael. [ALLEIGH WEEMS / SALINA JOURNAL]

DELPHOS — Going into space, winning the world series. We honor heroes with parades.

Rachael Bradshaw is recovering from Guillain-Barré Syndrome with a grace not always found in 14-year-olds facing potentially lethal illnesses. And because of that she will be honored as the grand marshal of the Del-Fest parade in Delphos at 10 this morning.

She and her sister Sarah, 8, will throw candy along the parade route from a fire-thorn red 1975 Cadillac convertible driven by their grandfather, Jim Bradshaw.

The Lions choose the grand marshal for Del-Fest every year. 

“She’s had a courageous fight since March,” said Majorie Klein, a member of the Delphos Lions Club and Rachael’s former Sunday school teacher.

Guillain-Barré Syndrome (pronounced ghee-yan bah-ray) is a rare neurological autoimmune illness. It is typified by a sudden onset of paralysis, starting at the feet, in most cases, and moving up the body.

On March 8, Rachael was riding her bicycle all over Delphos, according to her mother, Stacy Bradshaw. On March 9, Rachael walked into the emergency room at Salina Regional Health Center, and that was the last time she walked without assistance.

Pain moves up

It started, Rachael said, with tingles in her feet, “like my foot fell asleep and wouldn’t wake up.” From there the paralysis and pain moved up her body.

Rachael was lucky, Stacy said; the doctors diagnosed and stopped the GBS before the paralysis had spread to her lungs and she had to be on a ventilator.

“It was crazy,” Rachael said. “Before I got sick with Guillain-Barre Syndrome, I was totally healthy, just a few colds, so it was pretty surprising.”

“Traumatic,” her mother corrected her, speaking for both her daughter and herself.

She hurt everywhere, Rachael said, although she also had lost much of her sense of touch.

Pain was intense

At one point, she didn’t have enough strength in her fingers, referred to as pinch, even to hold on to her Harry Potter book. Her pinch is better now, but she still doesn’t have feeling in all of her fingers and she can’t do her drawing.

“The intense pain was the worst,” Jim Bradshaw said.

Rachael said she also lost the ability to regulate her own body temperature. She’d go from being too hot to needing four blankets to being too hot.

“I cried and cried,” she said.

Then ... paralysis

Then there was the paralysis. She couldn’t walk, she couldn’t sit up by herself, she couldn’t feed herself the Spaghetti-O’s or Chef Boyardee cheese ravioli she wanted.

When Klein visited her at Madonna Rehabilitation Hospital in Lincoln, the first thing Rachael showed her was she could tie her own shoes, a sign of progress.

Rachael made a deal with her mother: If she walked again, her mother would have to quit smoking. Rachael walked out of Madonna to the car to come home Aug. 1.

Stacy is trying to quit smoking again, but it’s hard. Sarah is an ally; she lets everyone know when Stacy slips and lights up.

Treatment painful

The treatment, though successful, was also painful.

Because GBS in an autoimmune disease, it turns the body against itself and destroys part of the nerves. Treatment tries to trick the body into not attacking.

First was high-dose immunoglobulin treatment. Doctors give intravenous injections of proteins that, in small quantities, the immune system uses to attack invading organisms. These proteins can lessen GBS’s attack on the nervous system.

The immunoglobulin treatment helped, but not enough, so the next step was plasma exchange, or plasmapheresis. Stacy likened it to dialysis. For 10 or 11 days, the blood is removed, the red and white blood cells are removed from the liquid, or plasma, and the blood cells are returned to the body. The blood cells were transferred by way of an internal jugular line, inserted in her neck.

Rachael said it made her stiff and she couldn’t sleep on the line, afraid she’d pull it out, thinking it was inserted shallowly. She learned later that, no, the line had actually been fed into her heart.

After that, she had a course of high-dose steroids.

Goal: Walk alone

She still uses walkers; her athletic career is on hold.

“I wanted to be on the volleyball team really bad,” Rachael said. “That’s not happening.”

Her goal is to be walking on her own by her birthday, Nov. 17.

She came home from Children’s Mercy Hospital in Kansas City, Mo., on May 5 for a month and to graduate with a 4.0 GPA from eighth grade at Minneapolis Junior High School.

Then on June 5 she returned to Madonna for about two months. She’ll go back to Madonna next week for an intensive rehabilitation day program for four to 12 weeks, four to five hours a day, five days a week. GBS rehabilitation is like rehabilitation from a spinal cord injury, Stacy said.

They still don’t know what caused the onset of GBS.

“They tested her blood for all kinds of viruses,” Stacy said. They don’t know; they won’t ever know.”

There are so many mysteries connected with GBS. Rachael wants to bring them out into the open.

“I want to teach about Guillain-Barre because it’s not really talked about,” she said.

And she’s considering a career change.

“Before I got sick, I wanted to be a veterinarian,” Rachael said. “Now I think I want to do something with people.”

Rachael Bradshaw wrote this about Madonna Rehabilitation Hospital in Lincoln, Neb., and posted it on her Facebook page Aug. 2:

"I did it. My goal was to walk out of here. It’s been my goal since I had gotten here. Madonna and the amazing people who work here have truly been a blessing. When I got here I could hardly sit myself up from lying in bed. Now I’m walking and so much better than I was. I’ve met lots of unforgettable people here, whether they were a patient and their family, employee, or a visitor. I remember getting here and crying because I didn’t see how recovery from this was possible. I know I still have lots more progress to make, but I’ve already come so far from where I was when I first got here. Recovery is such a beautiful thing, and I can say that it is possible."

Recovery is beautiful