Devon was born at full term with no complications, but at approximately 6 months of age, his mother, Cari Demps, noticed he was not meeting his milestones. “He was not sitting up on his own, then he did not crawl, then he did not walk,” she said. Demps immediately sought the help of pediatric specialists and he began physical therapy. At the age of 2, Devon began to experience something more serious. He started having seizures. Devon was diagnosed with a developmental delay and a seizure disorder known as Lennox Gastaut Syndrome, a severe and rare form of epilepsy.
“Once the seizures started, everything stopped developmentally,” Demps said.
“When I met Devon, he was in a difficult state, said Dr. Monica Payares-Lizano,” orthopedic surgeon at Nicklaus Children’s Hospital who specializes in the treatment of children with cerebral palsy and musculoskeletal trauma. “He was having multiple seizures a day and was not walking. His family had been told he would never walk,” said Dr. Payares-Lizano.
Physical and occupational therapy helped Devon flourish and gain confidence, but not being able to walk or even straighten his legs caused his muscles to become rigid.
Dr. Payares recommended the Demps family consider orthopedic surgery to straighten his legs in the pursuit to help him stand. For patients like Devon, the ability to stand supports the body’s pulmonary function, makes bones stronger and improves quality of life.
“At first, I was hesitant and had to really think about it. Devon had never had any type of surgery and as a mother I was hesitant to put him through more than what he already goes through,” said Demps.
The outcome, however, has been well worth it for the Demps family.
“With every week and every physical therapy session after surgery, he has shown tremendous improvement,” said Nicole Greenberg, a physical therapy doctoral resident at Nicklaus Children’s Hospital who began working with Devon as soon as he was cleared for therapy six weeks after surgery.
In fact, Greenberg says that she sees an immense potential in him and a determination to walk.
“It has been amazing to see him progress. Although he is not verbal, after the surgery we noticed a change in him and how motivated he is to move. You can tell he enjoys therapy sessions,” said Greenberg.
Devon is a strong stander at home and is learning to use a walker in his therapy sessions. With every day that passes he is strengthening his legs. This has led to improved health overall. At the rate he is progressing, Dr. Payares says it is possible that he may walk on his own someday.
Demps says she is amazed by how much her son has achieved. “As a parent, we want the best for our children. We want to protect them but we certainly do not want to limit them. It is amazing to see your child surpass their limitations and flourish. I am so thankful for that; it brings me great peace,” she said.
