By Tommi O. Peters
For the Tribune
TRUSSVILLE — Ella Grace was on her first softball team when she began experiencing neck pain. First believed to be sports related, the pain increased in intensity and spread to her thumb and then her knees. Her parents, Butch and Sonya Young, took her to a pediatric rheumatologist who provided then six-year-old Ella Grace with a diagnosis of Juvenile Arthritis.
When asked what it means to be the youth honoree at an event like Mudbugs & Music, Ella Grace lit up and shared about how this event will help support Camp MASH (Making Arthritis Stop Hurting), which she has attended for the past 5 years.
“It’s a typical summer camp with swimming, ropes course, arts & crafts but if you need limitations they’ll give those to you which has been helpful to me and a lot of other kids,” she said. “Kids don’t feel like they stand out when they need limitations because everyone there understands what it’s like.”
Butch elaborated that Camp MASH is Ella Grace’s favorite thing to do all year. “When she gets home from camp, she immediately starts counting down the days until camp the next year on a calendar in her room.”
Because of fundraising events such as Mudbugs & Music, as well as generous donors and volunteers, Camp MASH is completely free to all children that attend.
“When we drop her off for camp, it’s the same staff and doctors we see when we take Ella Grace for her appointments at Children’s Hospital. They volunteer their time for the week.” said Butch. Sonya added, “Because I feel comfortable as a Mom knowing that she’ll get medicine in the right dose or at the right time, Ella Grace can have the typical summer camp experience.”
Fundraising from Mudbugs & Music also helps offset the cost of medicine. Sonya explained that part of Ella Grace’s ongoing treatment includes a shot that would be $4300 per month without insurance. She added, “We’re blessed with insurance that helps offset these costs, but some families don’t have that option. Mudbugs & Music helps them get the medicine they need.”
She said that God has helped her through the entire journey, but especially the days when her pain makes it difficult to walk or hold a pencil. “Even if on this earth I never see a cure, knowing that one day I’ll be free from any pain or limitations helps me a lot,” she said.
Ella Grace no longer plays softball, but certainly hasn’t slowed down. The treatment allows her to continue a very active lifestyle. In addition to taking piano lessons, she serves as manager of the volleyball team and is on the debate team at Hewitt Trussville Middle School.
“Showing up to eat crawfish may not seem like a big deal, but it makes a very tangible difference to families like us,” said Butch.
Mudbugs & Music is scheduled for Saturday, May 5th from 1 p.m. until 5 p.m. at Cahaba Brewing Company. Live music and all-you-can-eat crawfish and sides with tickets start at $10 each, which will be available at the door. For more information, visit www.arthritris.org/mudbugsmusic.