Former Sag Harbor Family Raises Funds For Daughter Fighting Neurological Disorder

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Bella Adlah and Dr. Naoya Ogura with her painting of the Santa Monica Pier at Re+active Physical Therapy in California.

Bella Adlah is nothing short of a sweet, upbeat, 16-year-old girl — kind, giving and caring, with a wide, bright smile full of braces.

She loves drama, dance and singing, spending time with her friends and family, and exploring the outdoors. She even started a not-for-profit during the COVID-19 pandemic that delivered care packages to children in hospitals.

But that ground to a halt when she suddenly found herself in one, too — diagnosed with a neurological disorder that made it impossible for her to move, eat, speak, or see.

As of Tuesday afternoon, 435 donors had raised over $40,600 for the GoFundMe campaign “Bella’s Road to Recovery,” but her mother, Linda Adlah, explained that her daughter has a long way to go.

“I’m starting to slowly, slowly get her back,” she said last Friday morning during a telephone interview. “Even though she’s been through hell, she has the best disposition about it all.”

Bella Adlah works on opening all of her fingers at Re+active Physical Therapy in California.

Growing up in Sag Harbor, Bella was the picture of health. She and her younger sister, Gabby, loved living on the East End, their mother said, until 2018, when the family moved to Boston, Massachusetts.

It was a year ago that Bella first noticed an unusual numbness and pain in her hands and feet. First, doctors diagnosed Bella with arthritis, then lupus. But as her symptoms only increased in severity, Adlah transferred her daughter to Boston Children’s Hospital, where her physicians ran an array of tests, searching for a neurological component.

In the meantime, Bella had developed non-epileptic seizure moments triggered by migraines.

“If her migraine is worse, her seizures are worse,” Adlah said. “Then, she had a horrible migraine that led to an awful seizure that impaired her ability to walk, which led us to the emergency room and a two-week stay at Children’s in June.”

There, doctors finally put a name to Bella’s medical condition: Functional Neurological Disorder, or FND, which affects the nervous system and how the brain and body send and receive signals — as opposed to a structural issue, like multiple sclerosis or a stroke.

“It’s like looking at a computer and her hardware is okay — her brain is okay, her spine is okay — but the software has broken down,” Adlah said. “So in order for things to get back on track, she needs an intensive therapeutic program to retrain her brain to do things again. Unfortunately, there are not a lot of programs like that.”

When Bella was discharged after two weeks, she left Boston Children’s Hospital in a wheelchair, her mother said, unable to walk unassisted. And she now had a feeding tube.

“We were told everything we needed to do, but none of it was in place,” Adlah said. “So, it was pretty much like being sent home blind.”

One by one, Adlah went down the list of inpatient and outpatient services given to her by the hospital — each, as she learned, were fully booked with a waiting list. “I was like, ‘All anyone tells me is what Bella needs, but no one’s giving it to us,’” she said.

Sisters Gabby and Bella Adlah

Over the next two weeks, Bella received two physical therapy sessions before the cycle repeated itself: A severe migraine that triggered a bad seizure, this time causing full-body tremors that landed the family in the emergency room yet again — followed by another two-week stay at Boston Children’s Hospital. There, she lost her ability to feel from her chest down, or to move any part of her body voluntarily beyond the shaking.

And she also lost her vision.

“What Bella has is considered more on the rare side. It is not something that a whole lot of research is done on,” Adlah said. “They say that this is all caused by some sort of trauma to your system, and trauma can be so many different things.”

When Bella was discharged from Boston Children’s Hospital for the second time, Adlah refused to leave until they had a plan in place, she said, which included outpatient therapy appointments until she could find an intensive program for her. Several denied Bella due to the severity of her symptoms, while others were simply over-capacity with months-long waitlists.

Just five days later, they were back in the emergency room because Bella was hyperventilating, Adlah said — this time at Massachusetts General Hospital, where there is a program for FND, but for adults only.

“Their neurologists have a better idea of what FND is,” Adlah said, “so they were able to work with her more and validated how she felt more, saying, ‘What you’re going through is real, all this is very difficult.’”

Another five days passed and the Adlah family returned home with a better plan, which involved a visiting nurse and at-home occupational and physical therapies until they were able to place Bella into Spaulding Rehabilitation Hospital — all the while searching for an intensive program for her.

Months later, Adlah found Re+active Physical Therapy in California, which has a program for Functional Movement Disorders. During a Zoom consultation, a doctor explained the program and asked Adlah if the family would be willing to relocate.

“I’m willing to go anywhere,” Adlah responded.

On October 23, the Adlahs settled into their hotel room in Torrance, California, where they have called home ever since. Each day, Bella participates in occupational and physical therapies that incorporate massage and sensory exercises, including music, aromatherapy and painting.

“They just think outside the box so much,” Adlah said. “They literally put bubble wrap on her legs and are popping the bubbles to give her legs some sort of sensation, to see if she can feel.”

Bella also takes “neuro yoga” and receives neuropsychological therapy twice a week, which teaches her calming techniques — like mindfulness, meditation and breathing exercises — that help keep stress at bay and her nervous system relaxed so that it can start rebuilding more connections.

“She’s absolutely amazing. Her therapists even say they would work with her all day, every day,” Adlah said. “She’s very eager, she’s very willing. She’s happy. She can’t see, but she’ll say to me, ‘Mom, can we go to the zoo today? I might not be able to see the animals, but I can hear them — and if guys tell me, I can visualize and visualizing make me happy.’”

Outside of therapy, her own version of school and family activities, Bella has recently found joy in making Christmas ornaments for “every single person we know,” Adlah said with a laugh. And even with her health difficulties, the teenager’s philanthropic nature hasn’t abated one bit.

As an offshoot of her not-for-profit, “Have Fun & Stay Strong” — which delivered over 300 packages with toys for pediatric patients in nearly two dozen hospitals — Bella set up a toy drive at her three therapy offices and has supplied a local California hospital with smaller versions of her signature care packages.

“One of the things that she’s talked about in therapy that she misses most is her ability to give back, so we talked about ways to do that while we’re here,” Adlah said, adding, “We were supposed to go home the day before Thanksgiving, but she’s starting to really make some good progress, so we extended for two weeks.”

When Bella arrived at Re+active Physical Therapy, she could not speak or see, or move or feel her body from the neck down. As of last Friday morning, she could move and feel all of her fingers, and feel up to her elbows, and she could move her left forearm to paint, while her right arm is still stiff.

“She’s able to speak — we can hear her voice more often, it’s not all the time,” Adlah said. “She’s also been seizure-free for 10 days, which is pretty spectacular, considering she was having six to eight seizures a day. She hasn’t had any in a little over a week. Within the last couple of days, she is beginning to see flashes of vision, too.”

Just later that day, Bella regained all of her vision.

“She is so happy to see the world again,” Adlah wrote in an update on the GoFundMe page, “and this momma has not stopped crying for the last few days.”

This Friday, the Adlah family will leave California — “We’re all pretty nervous around that,” Adlah said — and return home to Boston, where Bella will return to Spaulding Rehabilitation Hospital’s outpatient program and her mother will consult more specialists to try to pinpoint any underlying issues her daughter may have.

“Once we do get Bella back to a certain point, we want to make sure we can keep her system at a level that we don’t get to this point again,” she said. “This is something she’s gonna have to deal with for the rest of her life, but we want to make sure what she’s dealing with is more manageable than where we are right now.”

After sitting in on almost all of Bella’s therapy sessions, Adlah said she plans to transfer as much as possible to their home environment — and because Bella is so young, her doctors have said that there is a “good possibility of regaining everything back,” Adlah explained, but they cannot estimate how long it will take.

“I’ve already said in my head, if we start to see any slide back or the progress doesn’t continue, then I might contemplate coming back here again for more,” she said. “I can’t go from watching her work so hard and then going backwards. She’s so happy with where she is, I can’t have her falter.”

If money weren’t an obstacle, there is no question that the family would stay in California, Adlah said. But because the intensive program is not covered by insurance — so far, the cost has totaled $15,500, she said — and has required the family to live in a hotel, rent a car and keep up with their expenses back home, she doesn’t have another choice, she said.

“I’m a single mom with two daughters, we wouldn’t be here without my friends and family creating a GoFundMe making it possible,” she said, adding, “At the end of our day, our goal was to get her better, and we’ll do whatever we have to do to do that. She will continue to be our little trooper. She is most definitely our fighter who gets us through it all.”

To donate to the GoFundMe campaign “Bella’s Road to Recovery,” visit gofundme.com/f/qyjjvn-bellas-road-to-recovery.

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