A baby born with a life-threatening seizure disorder has beaten the odds. He was not expected to live to see his first birthday, yet he’s seen 18, and his diagnosis has even been changed.
The teen, James Laberee, is now thriving and is mastering a third language.
James’s parents Rosemary and Peter had three children before he was born.
“I walked away from a thriving career when my husband and I were welcoming our first child into the world,” mom Rosemary, 62, told The Epoch Times via email. “I was 37 then. I had three more children, and decided to apply my managerial skills to raising and teaching them myself.”
The parents homeschooled their three kids in New Jersey with great success.
When the couple’s fourth child, James, was born, he was diagnosed with MMPSI: Malignant Migrational Partial Seizure Disorder of Infancy. This severe form of epilepsy begins at a very early age and the seizures don’t tend to respond well to treatment, according to Medline Plus, an online information service produced by the United States National Library of Medicine.
“The hospital had social workers in the room with us when they told us that James would not likely survive his first year,” Rosemary told The Epoch Times. “It felt like a physical body blow … It was made harder to believe because James was physically so beautiful and perfect.”
Rosemary’s pregnancy had been “easy.” James weighed a healthy 8.5 pounds (approx. 3.8 kg) at birth. Yet his seizures were intractable, only stopping when most of his brain activity was subdued by a cocktail of medications.
“We were very scared,” said Rosemary. “Scared for him. Scared for our future. Scared for the pain and loss this represented for our whole family.”
James spent several weeks in the NICU with his brokenhearted mother by his side, experiencing seizures up to 100 times a day. However, the most challenging task was explaining James’s condition to his three older siblings, aged 9, 7, and 3 at the time.
Through a cloud of grief, “we told them that God might want to have James back, that we might not get to keep him,” Rosemary explained. “They listened to the simplified explanation I gave them about his rare seizure disorder, and they cried.”
Yet a child’s mind, said Rosemary, “deals with what it sees.” The children saw their adorable baby brother; “they believed they would heal him with their love,” said their mom. “Maybe they did.”
“[T]hey held him constantly. Sang to him. Read to him. Played music for him. Fussed over him. Called 911 when he wasn’t breathing after a particularly long seizure,” Rosemary shared in a Quora post titled, “What’s the hardest thing you have ever had to tell your children?”
James’s first year was difficult for everyone. Yet with the support of myriad doctors, social workers, and therapists, they coped. Faith and family played starring roles.
“We had strong faith. We had each other. We prayed,” Rosemary told The Epoch Times. “I wasn’t sure how we’d cope if James died, but I knew the best path forward was to make our days as normal as possible.”
James accompanied his family for hiking, birthday parties, playdates, outings, and church activities, albeit heavily sedated. Yet Rosemary began to notice a change: James was having fewer and fewer seizures. Encouraged by what she witnessed, Rosemary sent videos of James to the neurologist where he was alert for long stretches of time and had not seized once.
His neurological team then admitted him for a four-day observation, drawing an incredible conclusion after just 24 hours: For the first time in James’s short life, his EEG activity was normal. “They were delighted and flabbergasted,” Rosemary said.
James was then weaned off his medication over the course of a year, and by the age of 2.5 years old, he began to walk. “When he took his first steps unaided, we all exploded with joy,” Rosemary recalled. “Honestly, at that moment, I thought anything at all was possible.”
While behind his peers in gross and fine motor skills, James was sharp as a tack, cognitively-speaking. He learned to read soon after learning to walk.
Rosemary constantly worried that her youngest son’s seizures would return, but her “four blessings,” as she calls her children, thought otherwise.
“When [James] was almost 10, my older kids urged him to participate in a homeschool swim class,” Rosemary recalled. “I watched warily … Then I saw him take 20 messy strokes forward.
“I just wept,” she remembered. “It was a turning point for me. I stopped worrying, then.”
Meanwhile, James’s official records in the hospital, and his diagnosis, were changed when he was 10 years old.
Before long, he began to show an aptitude for languages. “He is very bright, with a gift for learning new languages,” Rosemary said. “He is working on mastering his third language.”
He was exposed to Latin at an early age. His skills even won him a scholarship to the Balkans, where he lived for seven months.
“He is completely fluent in Macedonian and can get by in Bulgarian and Russian, too,” Rosemary told The Epoch Times. “Now, he is becoming fluent in German.”
Rosemary returned to work when James left for the Balkans. Currently, she is a remote worker at the Children’s Hospital of Philadelphia in the Strategy and Innovation department.
James is a healthy, thriving teen who loves lifting weights, running, rowing, and fishing. He also loves reading and gaming. “He is very funny,” said his mom; “he makes us laugh out loud every day.”
In August 2021, James will depart for a year in Germany.
“I feel like the luckiest mother in the world,” Rosemary reflected. “Every day, I am grateful beyond measure.”