Journal and Courier from Lafayette, Indiana • Page A4

When she was able to get back (and act) and really be able to focus on that, I think that really helped turn her focus from, well, I got through that. good to go. Now we can move on to post-surgery Gracie. I can get on with my TIFFANY LORTON, mother And eyes assume a straightforwardness when she chronicles her journey through the surgery she had last year to treat her Chiari malformation, a neurological disorder caused from a structural defect in the back of the brain and skull. She calmly articulates the details of the symptoms, tests, hospital visits and recovery.

is a really tough kid. I think you understand how tough a 7- or 8-year-old can be until put into a situation like said her mother, Tiffany Lorton. hen the third-grader talks about her condition, that composed sense of purpose shows through even as she admits her fears. I was going in (to surgery), never been that scared before. You know, for a first surgery, a brain surgery is like, a big Grace aid.

I know what at all was going to appen. Were they going to have to draw my blood a lot or a little? Or even at a ll? Are they going to give me lots of medicine? Am I going to throw up? All hese things I was just worried about. What happens if the surgery goes Astar is born Acting became a constant in life before the Chiari diagnosis set her a nd her life on the course of the unknown. er grandmother signed her up for lessons at Myers Dinner Theatre when she was 6 years old, and Grace quickly took to the craft even as she confronted its challenges. he Hillsboro theater is rooted in the hristian beliefs of its founders, Donna and Richard Myers, and champions a family atmosphere, said Michael Moyer, aco-producer at the theater and one of the partners in Revolution Productions, he company that puts on shows at the loc ation.

The theater enveloped Grace into a culture characterized by positive productions and home-cooked meals before shows. really like it because I make a lot of ew friends from Grace said. the first show, you know hardly a nybody if nobody else that you know acts. But at first you get to know everybody and then you know some of the people if they audition or if they came to ne of the shows to watch you and you et From early on, teachers focused on improving her volume, assert- i veness and spontaneity on stage. When she first came to lessons, Moyer said, hearing what she said was ifficult even for those sitting next to her.

Breathing exercises boosted her voice projection, and Grace counts their ffect on stage presence her most important lesson so far. I mprovisational games similar to hose on the famous show Line is it improved ability think on her feet and use her instincts, Moyer said. is a very analytical and very careful thinker, and, you know, she wants to be Moyer said. getting her to understand that when on stage, playing somebody else and creating that, so robably whatever your first instinct is, is the correct As she worked on these lessons, natural ability showed through, and she soon acted in her first production at Myers. er excitement and eagerness to learn stood out to her teachers.

Grace let on that she suffered from headaches or any of the other Chiari symptoms, Moyer said. He know anything was physically wrong until her amily told him of her diagnosis. Diagnosing the disorder Grace remember not having headaches. They were simply part of her xistence. hat changed on Christmas Day in 2013.

A then 7-year-old Grace went to retrieve her coat at her house, and she return for a while. When Lorton asked what took so long, she told her mom she had a bad headache and had to lay down for a bit. nursing background kicked i and she began questioning Grace. Her answers pointed toward aneurological issue. Grace had been exp eriencing severe headaches, tingling a nd numbness in her limbs, and dizziness.

Suspecting a Chiari malformation, er pediatrician recommended an MRI. he first results mention the condition, but a second reading showed cerebral tonsils extended 16 millimeters past where they should have been. The diagnosis for was positive for type I. In this condition, the cerebellum the bottom portion of the brain descends below the skull and into the spinal area, which affects the flow of cerebro- pinal fluid that travels through the brain and spinal chord, among other complications, according to Conquer hiari, a nonprofit organization that sponsors research and educates those affected by the disorder. he causes clear.

Most organizations and neurosurgery departments say people are born with Chiari whether it is genetic or occurs because of abnormal fetal development is up for speculation. ost of the time, doctors identify hiari incidentally, said Dr. Francesco angano, a pediatric neurosurgeon who perated on Grace at Cincinnati Child Hospital Medical Center. Some might be athletes with a minor injury or oncussion, he said, and Chiari is identi- ied when they undergo a scan. He said the clinic sees a few hundred patients every year whom he would diagnose with type and of those, it recommends surgery for 20 to 25 percent.

you get enough compression on the back of the spinal cord, you can also ave some sensory symptoms that go a long with Mangano said. we start hearing about numbness and tingling in the hands, difficulty with bal- a nce, difficulty with orton and her husband met with neurosurgeons in Indianapolis, Chicago and Cincinnati, trying to deduce whether race should have surgery. Because of varying nature some patients show symptoms the decompress ion operation is not always the answer. If Mangano is unsure of whether a patient should have surgery, he said he waits to better assess the headaches and other symptoms. To help determine this, Grace tallied the quantity and severity of her headaches daily.

She estimates having expe- ienced, on average, 15-20 headaches per day that could last up to a few minutes each and hover around four to six on a 10- oint pain scale. Over time, her symptoms worsened and she began losing balance, said Lort on, who chronicled the experience on her blog. So Grace went in for surgery in July 2014. Lorton and her husband would take turns sleeping in the room with their daughter since there was space for only one person. All of your knowledge and comfort a round health care goes out the window hen dealing with your own Lorton said.

no longer a nurse when sitting in that pre-op room getting ready send your child into Rough road to recovery Surgery to treat type of Chiari malformation is aimed at relieving pressure on the spinal area. When he operates on patients, Mangano makes a mall incision from the bottom of the kull to the top of the neck behind the hairline. He then removes about centimeters of the back of the skull and part the ring the skull sits on before thin- ing out the dura, which covers the GRACE Continued from Page 1A JOHN COURIER grandmother signed her up for lessons at Myers Dinner Theatre when she was 6 years old. really like it because I make a lot of new friends from Grace said. As she worked on her lessons, natural ability showed through, and she soon acted in her first production.

IF YOU GO Chitty Bang When: Noon with meal Wednesday and Saturday. 6:30 p.m. with meal Friday and Saturday. Through Nov. 7.

Call to be sure of pecific dates. Where: Myers Dinner Theatre, 108 Water Hillsboro $38 adults, $27 students with ID with eal; $21without meal information: Call 765-798-4902 or visit myersdt.com. ABOUT CHIARI Chiari malformation is a neurological disorder caused by a structural abnormality. The cerebellum descends below the skull and into the pinal area, which affects the flow of cerebrospinal fluid that runs through the brain and spinal chord, among other complications, according to Conquer Chiari, a nonprofit rganization that sponsors research and educates those affected by the disorder. While most organizations and neurosurgery epartments say that people are born with the condition, the exact cause known.

ymptoms include headaches, dizziness, loss of balance, trouble swallowing and numbness i extremities, although some people with the disorder experience them, according to the organization. About one in 1,000 people has the disorder, a nd about 300,000 live in the United States. AT JCONLINE Video: Grace talks about her xperiences onstage, where having 7 4A www.jconline.com Jour nal Courier.