Liselly Diaz watched in disbelief as the little boy in the store had a temper tantrum that would mortify any mother. If it was someone else’s child, as she had witnessed other times, Liselly could have walked away, quietly grateful that she didn’t have to deal with the situation. This time though, Liselly couldn’t walk away. This time, the child behaving so badly was hers. But such a public display was not at all characteristic of four-year-old Luisiel, a spirited and outgoing little boy who was always happy. “I was so embarrassed with the way he was acting,” says Liselly. “I didn’t know what was going on.”
Liselly, her husband Luis and Luisiel were on a Thanksgiving weekend trip to Atlantic City, New Jersey, in 2017, when Luisiel began acting strangely. “That weekend he got really hyper and uncontrollable,” says Liselly. “He was having three or four episodes a day lasting about five minutes each, but then he would just go back to playing around.”
During these episodes, Luisiel’s body would stiffen and his face flush bright red. Alarmed, Liselly took Luisiel to an urgent care center as soon as they arrived home. Luisiel complained of a belly ache. An ultrasound and x-rays were needed so Liselly took Luisiel to the emergency room of a local hospital. The tests led doctors to think Luisiel might have a serious and painful condition where part of the intestine slides into an adjacent section. Luisiel was immediately transported by ambulance to a Philadelphia hospital. “It was terrifying,” says Liselly. “It was the first time he had any sort of medical condition. They kept us there overnight.” Another round of tests showed Luisiel was suffering from constipation. He was released the next day and sent home to fast and cleanse for 24 hours.
Luisiel’s symptoms disappeared for about a week, but to his parents’ dismay came back. Over the next three weeks, Luisiel was in and out of the hospital and underwent a battery of diagnostic tests. Doctors finally determined that Luisiel was actually having seizures. The cause, however, remained elusive and they were getting worse, progressing from every two hours to every five minutes. “His heart rate was going up to 200 every time and the seizures were lasting 10 minutes,” says Liselly. “I was worried about him having a stroke.”
Luisiel was airlifted to the Children’s Hospital of Philadelphia (CHOP) where he remained for the next four months. Doctors were baffled. A more invasive approach to solve the medical mystery was needed. In a surgery that lasted several hours, neurosurgeons at CHOP drilled 15 holes in Luisiel’s skull and inserted electrodes to monitor and identify the area of the brain where the seizures originated.
After a week of monitoring, neurosurgeons removed the portion of Luisiel’s brain believed to be the source of the seizures. “Unfortunately, the seizures did not stop. I think out of all the time I spent there, that was the worst,” says Liselly. “Just seeing him with a bald head and a huge scar was really rough.”
As disappointing as the surgery’s results were, a pathology report became a critical piece of medical evidence leading to a diagnosis that was a game changer. Luisiel had Rasmussen’s encephalitis (RE), a rare neurological inflammatory disease in one hemisphere of the brain. RE most often occurs in children under 10, according to the National Institute of Neurological Disorders. Over time, RE can lead to the progressive loss of neurological functions including motor skills and speech, and eventual paralysis on one side of the body.
Neurosurgeons proposed separating the abnormal right hemisphere of Luisiel’s brain from the healthy hemisphere to prevent the seizures from reoccurring, a not uncommon surgery for children with RE. “They said this would give him the best outcome possible,” says Liselly. “His quality of life would be better with the surgery than without it.”
The procedure would come at a cost though. Luisiel would lose the left visual field in both eyes and fine motor skills in his left hand. He also would likely walk with a limp.
For Liselly and Luis, as difficult as it was to learn of the diagnosis, it was a relief finally to know what was causing the seizures, and that surgery was a viable option to prevent them from occurring. Here, at last, was hope.
On March 20, 2018, Luisiel had the surgery. For 12 hours, Liselly and Luis could only wait. Faith and the love of family who gathered around gave them strength. “I knew he would be okay,” says Liselly who found comfort in listening to Christian music during the surgery. “We prayed a lot and had a lot of prayers coming toward us.”
The results were nothing less than a miracle. “Luisiel had no seizures after that day, which was the goal,” says Liselly.
On April 3, 2018, Luisiel was admitted to the Good Shepherd Rehabilitation Hospital Emily Howatt Pliskatt Pediatric Unit in Bethlehem, just a couple of miles from the Diaz’s home. Luisiel’s side effects from the surgery were as predicted with the left side of his body most affected.Luisiel had to relearn everything, including how to walk. His left arm and hand were non-functioning and his left foot shook constantly. Luisiel also lost the left visual field in both eyes and needed speech therapy to help with cognitive deficits that affected his attention span and comprehension.
Two months later, Luisiel went home. Luisiel continues to receive speech, physical and occupational therapy in Good Shepherd’s outpatient Pediatrics Program where his engaging personality and spirit keep his therapists challenged almost as much as they challenge him. Using a variety of tools and techniques from warm water pool therapy to an iPad, Luisiel’s balance, strength, fine motor skills, and range of motion have improved.
Luisiel also benefited greatly from the ZeroG®, a system that uses a ceiling track and harness to partially support body weight and reduce the risk of falling. Good Shepherd is the only rehabilitation facility in the area to have the ZeroG, giving patients like Luisiel an advantage in their recovery. Now Luisiel can walk and run around on his own, although always with someone keeping a close eye on the rambunctious little boy.
“He’s really motivated by physical therapy and gross motor activities,” says Amanda Kleckner, a physical therapist and manager
of rehabilitation services for outpatient pediatrics. “Part of the reason he had so much trouble taking steps is because his brain wasn’t recognizing the left side of his body, so sometimes he would take a step putting his foot down in the wrong location making it unsafe to put weight on that foot.”
Luisiel also has regained some use of his left arm and hand. “Now he can lift his arm partially or use it to help hold something,” says Amanda. Speech therapy is focusing on improving Luisiel’s attention span and other cognitive deficits. Soon Luisiel will start vision therapy in Good Shepherd’s Vision Therapy Program.
Now five, Luisiel seems to be taking everything in stride, dashing about with seemingly boundless energy, playing video games with his father, idolizing the superhero Black Panther and looking forward to trips this summer to Dorney Park. “I’m glad his personality didn’t change at all,” says Liselly. “He’s in kindergarten now and he’s doing awesome in terms of socialization. He is super, super strong. The way he’s taken everything is just incredible. Nothing can bring him down. I hope he remains that way.”
Luisiel’s impish grin assures his parents that he will.