Local contemporary Christian bands have joined forces to “Rock the Cure” this Saturday, while “rocking out” on two stages in the Winn Dixie parking lot in Rockingham from 11 a.m until 4 p.m.
“There will also be a bounce house for kids, kids games and a car show,” said event organizer Scotty Mabe, the drummer for Fortress. “It’s all free, and anyone who wants to bring their car, truck or bike to the car show is welcome to join.”
Members of Fortress, fellowServant, 1st Assembly, Ingnite and Freedom Praise will unite for a day of free entertainment, to raise awareness for rare diseases that afflict at least two children in Richmond County.
Jack Berry, son of Lee and Amy Berry of Ellerbe, has been diagnosed with Dravet Syndrome.
Dravet Syndrome is a rare and hard-to-control form of epilepsy that begins in infancy. Children with Dravet Syndrome do not outgrow the condition, and it affects every aspect of their daily lives, according to dravetfoundation.org.
Children with the seizure disorder also face: behavior and developmental delays; movement and balance issues; bone problems; delayed language and speech problems; growth and nutrition issues; trouble sleeping; chronic infections; and problems regulating body temperature. People with this disorder also have a higher risk of death during seizures.
Individuals with Dravet Syndrome need constant care and supervision, which can be financially and emotionally draining for caregivers.
Jordan Wood, son of Walt and Randi Wood of Rockingham, has battled a rare disorder called Eosinophilic Esophagitis since infancy, and was finally diagnosed in December 2010. Up until that point, his parents had been told he suffered from severe acid reflux.
Children who suffer from this disorder often experience difficulty swallowing, nausea and vomiting, poor growth, malnutrition, weight loss, abdominal or chest pain, inability to eat and difficulty sleeping.
“Basically eosinophilic disorders are when white blood cells, which usually fight infections, identify food as a foreign substance in the body and try to attack,” said Randi. “Some people have the disorder in the esophagus, like my Jordan, and some have it in the intestines, some in the stomach — but it’s all somewhere in the digestive system.”
The five-year-old has now had eight endoscopic procedures, which must be done any time a new food is introduced to his diet.
“We’re taking a break from the procedures, because we go to a doctor in Greenville, South Carolina, who is out of our network,” said Randi. “The procedure is about $5,000 each time.”
Jordan’s current diet is fruit, cucumbers, allergen free cookies by Enjoy Life, So Delicious coconut milk ice cream, and Neocate Splash formula.
“Right now we know for sure that Jordan is allergic to dairy, soy, sunflower, beef, pork, carrots, rye, oats, squash, green beans, peas, almonds, peaches, wheat and corn,” said Randi.
Jordan took Easter in stride, giving all the candy from his plastic Easter egg hunt to other kids.
“He didn’t even complain about that,” said his mother. “He’s an amazing little boy.”
The band members hope to raise awareness about these little-known disorders on Saturday. Informational booths and guest speakers will help spread the word.
“Everything will be free, but all the money from the food sales from Glenwood United Methodist Church will be donated to the families to help them out with medical expenses,” said Mabe. “We will also have donation boxes out, if anyone wants to contribute.”
“I know it’s race weekend, so we might have picked a bad time,” said Mabe. “But, then again, there will be a lot of people in town which could mean that even more people will stop by.”
“We’re excited and humbled that the bands have included us in this event,” said Randi.
Randi and her husband have been working to raise awareness about Eosinophilic Esophagitis through participation in marathons and with their blog wrjwood.blogspot.com.
— Staff Writer Kelli Easterling can be reached at 910-997-3111, ext. 18, or by email at email@example.com