As Phyllis Boland sat on a couch in a home she’s renting because her house remains uninhabitable more than four years after Hurricane Sandy, the East Rockaway resident recounted the obstacles her son Andrew has faced — which started even before he was born and diagnosed with a rare neurological disorder.
While pregnant with Andrew in 1991, Phyllis was told she needed to undergo a dilation and curettage procedure because she may have had a missed miscarriage or a bad pregnancy. After the surgery, she recalled, she felt like she was still pregnant. Ten days later, the doctor confirmed it. Andrew had somehow survived the process, and was born on Nov. 15, 1991, seven months later.
“My son survived,” said Phyllis. “My son was meant to be here.”
She described Andrew, who is now 25, as a “modern-day miracle,” but life has not been easy for him. He began having seizures as a child and was misdiagnosed many times. Eventually it was determined that he had Landau-Kleffner syndrome, a disorder that includes the gradual or sudden loss of the ability to understand and use the spoken language.
Since the disease went largely undetected in Andrew’s early life, he never fully developed language skills. According to the Epilepsy Foundation, children ages of 3 to 7 who have Landau-Kleffner syndrome usually experience language issues with or without seizures, with only 20 percent still having seizures after age 10.
Andrew has suffered frequent and severe seizures throughout his life, and as a result, he now wears a helmet at all times. Last month he had six seizures in a row in a single day, and he vomited frequently, his mother said. He has had seven surgeries to combat his seizures, but nothing has worked.
On Jan. 23, his neurologist, Dr. Orrin Devinsky of the NYU Langone Comprehensive Epilepsy Center in Manhattan, suggested Charlotte’s Web, a hemp extract produced in Colorado. Phyllis said that Andrew went from having seizures every other day to having just two in 12 days since taking it.
“I’m so grateful for all of it,” she said. “But I’d be lying if I said it’s a walk in the park. It’s not a walk in the park.”
She noticed that Andrew had an increased appetite and stopped frequently vomiting after taking Charlotte’s Web. Though it is cannabis oil, the concentration of tetrahydrocannabinol, or THC, — marijuana’s active ingredient — is so low that Andrew does not get high. And while Charlotte’s Web has helped ease some of his health issues, it is also expensive. Phyllis said that a 3.38-fluid-ounce bottle costs about $300 and on average lasts about 20 days.
Friends of the Bolands set up a GoFundMe page for Andrew so he can continue treatment.
As of press time, more than $3,400 had been raised. To donate or learn more about Andrew, visit www.gofundme.com/helpforandrewb.
Issues at an early age
Phyllis said she believes the issues her son has struggled with resulted from the procedure she underwent when she was pregnant with him. “There’s nothing that can convince me that [it] didn’t cause the problems that my son has,” she said. “You’re not even supposed to have a drink in your pregnancy, never mind general anesthesia, never mind a surgery.”
Before Andrew turned 3, Phyllis said, she traveled the country to try and find out what his disorder was, including visits to Chicago and California. After he was misdiagnosed as profoundly deaf, Phyllis said she eventually learned about Landau-Kleffner syndrome. When she met Dr. Devinsky, he confirmed the diagnosis.
Years later, Phyllis said, she learned about a device called the vagus nerve stimulator, which essentially functions as a pacemaker for the brain. It is placed under the skin on the chest wall, and a wire runs from it to the vagus nerve in the neck. This nerve is part of the autonomic nervous system, which controls functions of the body not under voluntary control.
According to The New York Times, the vagus nerve and its branches conduct nerve impulses — called action potentials — to every major organ. “That device changed his entire life in every way,” Boland said of her son. “He began to process auditory language. He began to [learn to walk].”
Andrew also underwent a NeuroPace Responsive Neurostimulation procedure, for which a small, battery-powered device was surgically implanted in his skull. The system monitors the brain’s activity and detects abnormal activity that could lead to seizures.
After having the VNS installed, Andrew did not have any seizures between the ages of 8 and 16. After his 16th birthday, however, he began to have them again. When he was 19, they increased in severity. Andrew spent his 21st birthday in an intensive care unit and looked like he was close to dying, Phyllis said, but eventually he was released. Until recently, she was unable to find a viable solution to her son’s seizures.
The post-Sandy struggle
Hurricane Sandy damaged the Bolands’ home on Adams Street, and they have moved four times in the last four years — which Phyllis said has been detrimental to Andrew’s condition.
“He doesn’t understand, 'Why am I moving now? Where am I going?’” she said. “Everything has changed over and over again. So just when he feels safe and he’s doing well and all the momentum was there, it gets pulled out from under him.”
After the storm, Phyllis said, they stayed with a family member for three weeks. They spent the next 11 months in a hotel, and then rented a house on Lawrence Street in East Rockaway. They also lived in Oceanside before returning to East Rockaway and renting their current home on Dart Street, blocks from where their Adams Street home stands vacant.
Boland said that her house has been gutted, is uninhabitable and needs to be raised. She added that since she is paying rent and a mortgage at the same time, she has had trouble fixing it up to make it livable. She said she refinanced her home through the Home Affordable Modification Program, which is designed to help financially struggling homeowners by implementing a system in which their monthly payments on their house are reduced, but the burden hasn’t eased.
“They tacked on more to my mortgage, and with fees and penalties to boot,” she said. “All so that I could hold on to a house that I can’t live in.”
Boland said that with the expenses of owning a house, renting a house and giving Andrew everything he needs, she is overwhelmed. “My priority here is Andrew,” she said. “Then potentially getting the funding necessary to get my house back.”
Friends of the Bolands have also started a fundraiser for their home. To donate, visit www.youcaring.com/phyllisboland-757226.