Girl battles back from rare syndrome
The Grand Rapids Press
ALLENDALE TOWNSHIP -- It started with an odd walk. Makenna
Kuncaitis, 4, was tripping over her feet and had sort of a silly
"It wasn't enough to alarm us. She could still jump and run," her
But it was enough for her parents, Ben and Amy Kuncaitis, to take
The next morning, Makenna complained her tummy hurt. A visit to
the doctor ended up in a three-month hospital stay.
Within 48 hours of the first symptom, Makenna was nearly
Makenna had a spinal tap, a CAT scan, an MRI and blood work.
"Everything was coming back normal, but Kenna was getting worse
by the hour," Amy said. Eventually, she couldn't move a finger or
Her heart rate was going crazy -- 89 beats to 160 beats per
minute in about two minutes. Her blood pressure was high, and she
was losing the ability to swallow.
"The doctors were still baffled as to what it was," Amy said.
Sensitive to touch
The right side of Makenna's face became paralyzed, her speech was
slurred and she was sweating profusely. A feeding tube was inserted
that would stay in for 2 1/2 months.
"She was so sensitive to touch, we couldn't touch her," Amy said.
"As a mom, I wanted to crawl in bed and hug her."
Makenna slept a lot, but when she was awake she would scream in
"It was very frustrating. I spent a lot of the night walking
halls with my ears plugged," her dad said.
At the end of the second day, a neurologist found the answer.
Makenna had Guillain-Barr, (Ghee-yan Bah-ray) syndrome.
"We had never heard of it," Amy said.
GBS is rare. Two to three adults of 100,000, and one in 800,000
children younger than 5, develop it.
Syndrome's cause not known
GBS is an inflammatory disorder of the peripheral nerves -- those
outside the brain and spinal cord. It is characterized by the rapid
onset of weakness and often paralysis of the legs, arms, breathing
muscles and face.
The cause is not known. About 50 percent of cases occur shortly
after a viral or bacterial infection, such as a sore throat or
The Kuncaitises believe Makenna's GBS was due to a virus.
Ben had been sick for several weeks with the flu, a couple of
weeks before the onset of Makenna's symptoms.
Once the diagnosis was made, treatment was started.
Makenna was given
intravenous infusion of immunoglobulins, or IVIg. IVIg is a solution
of globulins -- simple proteins that provide immunity against
disease -- containing antibodies normally in adult human blood.
Within three hours of
receiving the treatment Makenna began to respond. "Over the next
three weeks, we saw improvement every day," Amy said.
After three weeks at DeVos Children's Hospital, Makenna was
transferred to Mary Free Bed Rehabilitation Hospital for two months.
Makenna had six hours of therapy a day and wanted more. "She's such
a fighter," Amy said. "Her spirit never went a way."
Still attending therapy
"She basically had to relearn everything," Ben said.
Makenna came home June 22 and continues to improve. She goes to
therapy three times a week and uses a wheelchair only when tired.
Her prognosis is a full recovery.
Makenna remembers not being able to move. "It felt prickly, I
couldn't talk," she recalled.
Her sister Shyanne, 8, said it was creepy to come home from
school and find out her sister was in the hospital. During
rehabilitation, she occasionally spent the night with Makenna and
helped her with stretches and pool therapy.
Makenna also has a brother, Ben, who's 2.
The family is thankful for friends, family and members of
Resurrection Life Church in Grand Haven who helped them through the
ordeal with prayers, meals, housework and emotional support.
Recently, on the spur of the moment, Amy entered her daughter
into the Little Miss Allendale contest during the township's July 4
celebration. Makenna won the honor and got to ride on the pageant's
float during the holiday parade with Miss Allendale Abby Hitchcock
and members of her court.
"It's so nice to have her be a normal little girl," Amy said.
I can't even put into words how this experience changed our lives in
so many ways (most for the BETTER)! God is so good and His mercies
are unending! Thank you Lord for taking us through this experience
and showing us Your love! Thank you that YOU alone are our healer
and Your ways are so much higher and better than ours. We will
praise Your name forever!!