Every year, the Open Road Cruisers hold a car show in the fall months to benefit a charity or similar worthwhile cause. This year, the Cruisers have chosen to have their show benefit Gracie and Kayne McFarlain, a brother and sister who have been diagnosed with a rare disease that is still being researched and studied.

The McFarlains each have Arnold Chiari Malformation (ACM), which is also known as “Chiari” for short. ACM is a hereditary or acquired brain disorder, which often does not show symptoms until the patient has reached the age of 20.

The disorder has many signs and symptoms, and doctors are still discovering new ones today. Some of the recognized symptoms include headache, difficulty sleeping, fatigue, shortness of breath, blurred vision, difficulty swallowing, balance problems, memory problems, chest pains, weakness in the body, numbness in the body, dizziness, neck paid, nauseum tinnitus, gastro, seizures, sleep apnea, and even death.

According to the children’s mother, Mandy Thigpen McFarlain, Gracie was diagnosed with the disease in October of 2016. On March 6, at the age of 2, she underwent brain surgery that required a five-day hospital stay in New Orleans. For weeks after Gracie’s operation, the parents realized that Kayne had the same disorder, although his case was more complex. He was 5 at the time.

On June 1, Kayne had brain surgery in New Orleans as well. There were multiple complications that occurred post-surgery, requiring an extended stay of several weeks in the hospital.

Mandy McFarlain said she was raised in Bogalusa and her husband Justin is from the Mt. Hermon area, but they moved to Madisonville in late July. They still have many friends and family in Washington Parish, which is one reason their story resonated and earned the honor of being the Cruisers’ beneficiary.

“We were blessed and excited when we heard the news (about the car show). I just really want to thank everybody that made this car show possible, and thank them for choosing our family,” she said. “I also appreciate everyone that has kept them in their thoughts and prayers.”

McFarlain said that the children still have headaches and occasional eye pain as a result of the ACM, and have frequent doctors visits for treatments and MRIs. In addition, she said they would likely never be able to play contact sports or strenuous physical activity, due to the risk of head injuries.

“For example, the doctors are saying that for our daughter, gymnastics or any activity like that is out of the question,” she said.

Jeff Sharp of the Open Road Cruisers said that the McFarlain family is a worthy recipient of the show’s proceeds.

“It gives you a real warm feeling when you can help out people who need it,” Sharp said. “It’s something that we can give back to the community, and it’s also a great opportunity for friendship and fellowship.

“The family was very appreciative when they learned they had been chosen, and I know they really need the help so we’re happy to do it.”

The Open Road Cruisers’ car show will be Saturday, Sept. 16, from 9 a.m. until 2 p.m. at Cassidy Park.