Twins' family learning to live with MD

By Staff
Tracy B. Cieniewicz, Hartselle Enquirer
Conner and Carson Lovelady are beautiful, happy three-year-old fraternal twins who share the same birthday, the love of their family and friends, and muscular dystrophy.
Their parents, Chris and Stephanie Lovelady of Hartselle, became concerned when the boys were between four and six months old and weren't exhibiting normal signs of infant physical development.
"They weren't raising their arms and they weren't rolling over," Stephanie said. "They were sitting up without assistance, but they couldn't push up to sitting. Their doctor thought it might just be twin delay."
An occupational physical therapist worked with Conner and Carson when they were eight to 10 months old to see if the delay could be reversed. After one month of work, the therapist suggested the boys be evaluated at St. Vincent's Hospital in Birmingham.
"After a 15-minute evaluation, the doctor there told us that Conner and Carson probably had spinal muscular atrophy and might have a year to live," Stephanie remembered with tears in her eyes. "I was so mad, so angry. After a 15-minute evaluation, this woman just ripped my heart out."
Tests were needed to confirm the life-threatening diagnosis, which resulted negative for spinal muscular atrophy but positive for muscular dystrophy, a neuromuscular disease that causes weakness and muscle deterioration, primarily in the skeletal or voluntary muscles.
One week before their first birthdays, Conner and Carson each faced a muscle biopsy to identify the type of muscular dystrophy they had.
"The heart is a muscle, so the doctor's weren't sure if their hearts could stand the anesthesia for the tests," Stephanie explained. "The doctors deadened the area with novocaine to do the biopsy. They both have scars on their thighs from it. Conner, the stronger of the two, also had an MRI to confirm the subtype."
The biopsy and MRI confirmed that the brothers have merosin-negative congenital muscular dystrophy, a disease that presents itself with muscle weakness in infancy or very early childhood. It is caused by a genetic defect and the lack of all or part of the muscle protein merosin, which can affect the range of muscle weakness from severe (never walking) to mild (walking at two to three years).
"Conner has pulled up to standing in the last six months and has started cruising the furniture in the last two months," Stephanie said. "But neither of them are mobile, they're not independent. I don't know when we'll potty-train because they don't have the strength to pull their pants up."
According to the Muscular Dystrophy Association, the form of congenital muscular dystrophy Conner and Carson share progresses slowly and sometimes presents contractures (a fixed tightening of muscle, tendons, ligaments, or skin that prevents normal movement of the associated body part and can cause permanent deformity), difficulty breathing, seizures and the possibility of learning disabilities.
Stephanie explained that Conner and Carson are susceptible to upper respiratory infections, have delayed social, cognitive and physical skills, and lack fine and gross motor skills, but are otherwise healthy.
However, Conner, the physically stronger of the brothers, was recently diagnosed with autism.
"It became hard to communicate with Conner at about 18-months-old," Stephanie recalled. "Conner quit talking between 20 and 22 months. His communication and people skills decreased rapidly, so we knew something was wrong."
Stephanie, a social worker for Morgan County DHR Child Protective Services, works full-time and carries medical insurance for the family. Chris is employed full-time with Straight Line Drywall and Acoustical. Conner and Carson attend the developmental preschool program at Crestline Elementary School.
Stephanie said as the boys approach their fourth birthday Aug. 30, mobility and transportation issues are becoming a greater concern.
"We can get them around in their strollers now, but we won't be able to do that much longer," Stephanie explained. "They both have electric/manual wheelchairs that we leave at school because the chairs completely cover the back of my Honda Odyssey and I can't maneuver them by myself."
Hartselle Heritage Funeral Home, located at 1401 Main Street East, will host a benefit gospel singing for Conner and Carson on Sunday, March 5, at 3 p.m. featuring The Glory Road Quartet and The King's Messengers.
A love offering will be taken for Conner and Carson to help their parents purchase a full-size van to transport the brothers.
Conner and Carson are the grandsons of Charles and Mary Howse and Tommy and Nettie Beth Lovelady, all of Hartselle.
Stephanie said that her father, Charles, is a member of The Glory Road Quartet and finds joy in the fact that his grandsons share his love of music. Conner and Carson have a toy drum set and piano that they play along with their favorite CDs of children's music.
Chris and Stephanie find joy in making the best of their time spent with Conner and Carson.
"There isn't enough time in the day or resources to work with them on their stretching and other skills," Stephanie said. "We've come such a long way though. They are not the same–they both have their strengths and weaknesses. Our joy comes from their smiling faces. They are truly a blessing."