Many of Clinton’s businessmen and women, as well as civic leaders will go behind bars Sept. 10, all to raise money for and awareness of the Muscular Dystrophy Association.
The annual MDA Lock-Up fundraising will be held between 10 a.m. and 3 p.m. at Coharie Country Club. More than 200 business and civic leaders from throughout Clinton and Sampson County will be “arrested” and put “behind bars.”
Lock-Ups are one of MDA’s signature fund-raising programs, benefiting individuals living in the Clinton and Sampson area and suffering with muscular dystrophy, ALS and related progressive muscle diseases.
According to a press release provided by MDA, the “jailbirds” have been accused of having big hearts and being heavily armed with kindness. All “jailbirds” have volunteered to be a part of the MDA Lock-Up in order to raise “bail” by encouraging friends, family, co-workers and business contacts to make contributions to MDA that will directly benefit families in and around the Clinton and Sampson County areas. Lock-up for each person will last for one hour.
MDA also assists jailbirds in creating personalized Lock-Up donation websites to help raise their bail online ahead of time. The links for these websites can be emailed to friends, family and co-workers who could make secure donations online.
“It’s amazing how our community jailbirds have rallied around MDA and are doing a great job as they continue to raise bail donations,” explained MDA Executive Director, Christine Bender. “The actual day of the Lock-Up will be a fun celebration of the work each person did to help families who live right here in our community.”
In addition to raising funds to help support MDA, the event will also help send Clinton-area youngsters to a special week at MDA summer camp that has taken place at Camp Hanes. This year’s camp will be held June 7-13 in King, N.C. Youngsters with muscle disease, as well as the many volunteers who help create magic at MDA summer camp each year, enjoy a wide variety of activities designed specifically for youngsters with limited mobility. Some activities include horseback riding, swimming, football and arts and crafts.
The money raised during the Lock-up and other fund-raising events helps local families like Brad and Amy Bass. On Oct. 12, 2008, Brad and Amy welcomed a son, Reid, not knowing what that new birth was bringing.
“Never, in a million years, when I would watch the MDA marathon on television growing up, did I ever think that I would be helping to actively raise money to find a cure for muscular disorders,” Amy said. “We look at situations on television and wonder if problems like muscular disorders exist, or at least I know I did when I was naive to the fact that debilitating diseases do exist.”
Amy said her naive notion became a reality when Reid was born. During her pregnancy, Brad and Amy did not know anything about Reid suffering from a muscular disorder. Amy said it was at Reid’s birth, when he almost died, they knew something was terribly wrong.
“Reid was not breathing when he was born and had no muscle tone,” Amy said. “He immediately had to be intubated to survive.”
Reid was immediately rushed to Cape Fear Valley in Fayetteville and after three days, sent to UNC Hospital in Chapel Hill.
“I can remember, as if it was yesterday, the doctor saying that Reid would never smile or show any facial emotions,” Amy added. “Words cannot express how my husband and I felt to hear those devastating words. Little did we know what was yet to come.”
Reid stayed in the hospital in Chapel Hill for five weeks before coming home. During that time, Reid was subjected to numerous tests and procedures, all to no avail. When the Basses left to take Reid home, they still didn’t know what was going on. Amy says the only thing they knew for sure was they were elated to finally have him home.
Reid did leave the hospital with a feeding tube, since he was having trouble sucking a bottle. This allowed him to get the nourishment he needed and they hoped it would make him stronger and one day the tube would come out.
“Unfortunately this day never came,” Amy said.
Reid also required oxygen to breath.
Progressively, Amy said, Reid’s ability to use his muscles and help him perform simple tasks regressed. At 6 months old, Reid could not hold up his head, roll over or swallow.
“I will never forget the dreadful night my husband and I had to rush Reid to the emergency room because he could not breathe,” Amy said. “Shortly after, he was airlifted back to Chapel Hill, where the end was just beginning.”
During this stay in the hospital, a muscle biopsy revealed that Reid had a very rare muscle disorder known as Myotublar Myopathy. This disease, Amy said, is so rare, even the nurses in the Pediatric Intensive Care Unit did not know what it was.
Myotublar Myopathy steals a baby’s ability to use the muscles in the body. Even surviving at birth, Reid beat many odds. Most babies affected with this disease die as soon as they are born or shortly after. Those who survive, have a two-year survival rate.
“We were blessed to have Reid for six short months,” Amy said. “This horrific disease took his life away without him ever knowing what it was like to crawl, talk, walk, run and just be a normal little boy that was loved by his family.”
Since Reid’s death, both Brad and Amy have actively raised money for MDA by having a cookie sale every year at Union Elementary School. All proceeds from the sale go to MDA.
“We are able to raise a small amount, but any amount contributed can help researchers find a cure for Myotublar Myopathy, so that no other parents have to experience the loss of a child,” Amy added.
Brad and Amy are very thankful for MDA and the hope it provides families with loved ones suffering from a muscle disorder.
“Fundraisers like the MDA Lock-Up and Fill the Boot are just two ways the community can get involved in helping raise money for MDA,” Amy said. “A cure did not come in time to save our precious baby boy, but as long as there is life and MDA, there is hope.”
Teresa Bradshaw of Powell’s Insurance, who is one of the “jailbirds” ready for lock-up, said she believes in giving back to the community and participating in the MDA Lock-up is a great way to do so.
“I admit, I was initially sort of half-hearted in my fund-raising attempts,” Bradshaw said. “Then, a few days into the campaign, I was down at Kure Beach and I saw these kids with muscular dystrophy being pushed in their wheelchairs, coming off the beach. What hit me was how happy and cheerful they were, and it touched my heart.”
Bradshaw said she decided to kick her campaign into a higher gear and she is now honored to be a part of the local efforts.
“I made a promise to MDA that Powell’s Insurance will send at least one child to camp, which costs $800 per child,” Bradshaw added. “I intend to keep that promise.”
Liz Welborn, MDA Fund-raising coordinator, said the Clinton Fire Department is also a big supporter of MDA and will be helping raise money with a Fill the Boot Campaign Sept. 24-26 at Walmart.
“Firefighters are one of our biggest partners and this year marks our 60th anniversary of our partnership, so we are thankful to Clinton Fire (Department),” Welborn said.
MDA is a non-profit organization providing clinical services, free medical equipment, support groups and a summer camp program to families with muscular dystrophy living in the Clinton and surrounding area. MDA is a national organization, working towards funding a cure for the 43 types of neuromuscular diseases including ALS, Duchenne, SMA, Myasthenia Gravis and more.
For more information on MDA, the diseases covered or the services provided, visit www.mda.org. For more information on the Lock-Up campaign, contact Welborn at 910-763-3114 or firstname.lastname@example.org.