Parents maintain vigil for daughter
By Dana Delgado
The unimaginable ordeal of Liberty Hill residents Mark and Sheila Neuenschwander and their daughter, Kayla Brooke, is entering its second month with months, possibly years still ahead of them.
Kayla, a 2012 graduate of Liberty Hill High School, had attended the University of Texas at San Antonio for her prerequisites and was enrolled in the dental hygienist program with the University of Texas Health Science Center also in San Antonio when she fell ill on Labor Day weekend. Almost immediately, Kayla called her mom who told her to go directly to the emergency room. After evaluation and only 24 hours after being admitted, she was diagnosed on Sept. 6 with Guillian-Barre Syndrome, a rare neurological disorder afflicting only about one person in 100,000, according to the National Institute of Neurological Disorders and Stroke (NINDS).
Kayla remains in the intensive care unit at a San Antonio hospital where her parents, who have taken leaves of absence from their employers, maintain a vigil at her bedside. Her father reports that his daughter is completely paralyzed.
“It’s a matter of time,” said Mr. Neuenschwander in a telephone interview from San Antonio. “About 80 percent of people recover from six months to three years, but 20 percent are severe cases and end up with a severe disability. Kayla has already begun to receive the only two effective treatments known, IVIG Infusion and plasma exchange.”
According NINDS, Guillain-Barré syndrome (GBS) is a disorder in which the body’s immune system attacks part of the peripheral nervous system. Initial symptoms include varying degrees of weakness or tingling sensations in the legs. In a number of cases, weakness and sensations spread to the arms and upper body. Symptoms can increase in intensity until certain muscles cannot be used at all and, when severe, the person is almost totally paralyzed. In these instances, GBS is life threatening – potentially interfering with breathing and, at times, with blood pressure or heart rate – and is considered a medical emergency.
According to NINDS, Guillain-Barré syndrome has no known origin and can affect anybody at any age but most individuals, however, have good recovery from even the most severe cases; although some continue to have varying levels of weakness.
Family friend Cindy Van Meeteren said there has been some progress, but that Kayla’s condition remains serious.
“Although Kayla is able to express herself more and more, she is still critical and is still being supported with a ventilator; although she has been breathing on her own for short periods,” Van Meeteren said. “She is very intelligent and strong willed. She is a fighter. Once Kayla fights through this, she will need to go into a long-term rehabilitation center and her parents will need to make modifications to their home where Kayla can live until she is fully recovered and can pursue her dream.”
To raise awareness about Guillian-Bare Syndrome and to assist Kayla and her family with mounting and unforeseen medical expenses, some fundraising events are planned.
A Go Fund Me Account has been established that seeks donations and provides updates on Kayla. The account can be accessed at www.gofundme.com/3e3xyhe8. In addition, a group of family friends are organizing a 5K “Fun Run for Kayla – Be Strong & Courageous” on Nov. 7 at Brushy Creek Lake Park at 600 N. Bell Blvd in Cedar Park beginning at 9 a.m. The event is being hosted by the “Last Sunday Running Group.”
The registration fee for the race is a minimum $20 donation. To pre-register simply visit www.gofundme.com/3e3xyhe8 where you make your donation and indicate Fun Run in the comments box.
You can also register on the day of the race with cash or check. In conjunction with the run, a silent auction is being planned but local business and community support is needed and “Be Strong & Courageous” T-Shirts are being sold.
“They need our strength and support,” Cindy Van Meeteren said. “More participation means more financial support for the family.”
Contact Cindy Van Meeteren at (512) 663-3643 or visit www.facebook.com/events/1473209552984126/ for information on the various events scheduled in support of the Neuenschwander Family. For additional information on Guillian-Barre Syndrome visit http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm