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WordPress database error: [The table 'wp_options' is full]
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But when Jessica tumbled off the bleachers while preparing to accept a math award at her South Jersey high school graduation, the undeniable reality that something more than mere clumsiness was at work became glaringly apparent.

Three years later, when her daughter received the shocking diagnosis, Judy Kalnas immediately recalled statements her own mother had made decades earlier about another family.

Those remarks would come to have particular resonance after what Kalnas learned about her own children, especially Jessica, now 31.

A diagnosis discarded

The summer Jessica was 14, her large extended family rented a house on North Carolina’s Outer Banks. One afternoon Judy spotted Jessica crawling up the steep steps from the beach on her hands and knees. When she asked her daughter what she was doing, Jessica replied, “It’s just easier.” After one of Judy’s sisters agreed, she gave it little thought.

But over the next year, Jessica seemed to become increasingly uncoordinated. Although she had been cheering for a decade, she did not make the cheerleading squad her sophomore year. Jessica told her parents she thought her failure to land a spot was the result of not smiling enough. Her mother learned later she couldn’t perform the jumps. Jessica joined the field hockey team instead.

Jessica said that at the time she realized “something was very wrong.” She didn’t say anything to her parents for fear of worrying them or having to limit her activities.

“I thought it would eventually just disappear if I did things to strengthen my legs. So I would always act like I was okay when I would fall,” she said.

Her mother, a preschool teacher, was concerned. “I would go to [field hockey] practices and watch and think, ‘Why isn’t she running like everybody else?’ ” Judy recalled. Later she learned that the coach had been alarmed by Jessica’s repeated falls during practice.

The graduation night fall from the bleachers in 2008, when Jessica said her “knee just gave out,” proved to be a catalyst.

Within days, mother and daughter saw their family physician. He referred Jessica to a neurologist in nearby Camden.

The neurologist ruled out Duchenne muscular dystrophy, a genetic disorder characterized by progressive weakness that strikes young children, usually boys. She prescribed medication for myasthenia gravis, a rare autoimmune disease that affects the muscles and often causes droopy eyelids.

Jessica took the drug for a month but showed no improvement. Her family doctor then referred her to a neurologist in Baltimore with expertise in spinal muscular atrophy, a rare genetic disease that destroys nerve cells.

The specialist told Jessica and her parents he was fairly certain she had spinal muscular atrophy; a muscle biopsy seemed to bolster that diagnosis.

But after a year, an MRI scan showed that one part of Jessica’s brain was shrinking. “I remember everybody seemed stumped,” Judy said.

The specialist expressed doubt that she had spinal muscular atrophy and referred her to the National Institutes of Health. Jessica was seen by a specialist in hereditary muscle diseases who ordered genetic testing. The results, which took many months, stunned and bewildered the family. Jessica had Late Onset Tay-Sachs disease (LOTS), a progressive, incurable genetic illness.

‘That can’t be!” Judy remembers blurting out. “We’re not Jewish.”

Fatal regression

For roughly a century Tay-Sachs disease, named after two physicians who pioneered the description of the neurodegenerative disease, was believed to almost exclusively affect Ashkenazi Jews from central or Eastern Europe. One in 27 people of Ashkenazi Jewish ancestry carry the genetic mutation that causes Tay-Sachs, a rate ten times higher than the general population.

Tay-Sachs, which typically affects infants, results from the absence of an enzyme called hexosaminidase A, which prevents the harmful accumulation of a fat in the brain and spinal cord. Babies, who are typically affected in utero, appear normal until about 6 months when they begin to regress, eventually becoming blind, demented and paralyzed. The disease is nearly always fatal by age 5.

Since the discovery of the gene that causes Tay-Sachs in the late 1980s, screening programs and genetic counseling in Jewish communities have become routine and the number of infants with Tay-Sachs has plummeted.

Scientists now know that anyone can carry a disease-causing mutation, of which there are more than 100. Concentrations of Tay-Sachs cases have been discovered in often isolated non-Jewish populations including the Irish, French Canadians from Quebec and Cajuns in Louisiana, NIH specialists informed the Kalnas family. Late-onset Tay-Sachs, a recently discovered, less-severe variant of the disease resulting from a deficient level of HexA, surfaces in adolescence or adulthood.

“It was an eye opener,” said Judy, who has Irish ancestry. “All I could hear was my mother’s voice talking about a family we knew whose child had Tay-Sachs” and how terrible it was. “I remember thinking as a child, ‘Why is she bringing this up?’ I’ve wished so many times I could ask her.”

Judy Kalnas has since often wondered whether the disease had struck her own family decades before Jessica was born. Was that why her mother kept mentioning it?

Unlike babies with Tay-Sachs, who have a telltale cherry red spot in their retinas, late onset cases can be very difficult to diagnose. Symptoms and severity vary greatly and decline is more gradual. Diagnosis of the disease is made through enzyme and genetic testing.

“Not only does the average person not know about this,” said neurogeneticist Heather A. Lau, associate director of the division of neurogenetics at NYU Langone, “but my colleagues in neurology aren’t aware of LOTS.” Some people with late onset disease have been told they have multiple sclerosis or ALS, said Lau, who treats about a dozen LOTS patients, several of whom were diagnosed in their 50s.

Diagnosis is further complicated because in about 40 percent of cases initial symptoms include a manic episode or other psychiatric symptom, according to the National Tay-Sachs & Allied Diseases Association, a Boston-based support and advocacy group.

All forms of the disease result from the inheritance of a mutated gene, one from each parent who are both carriers. For each such pregnancy, there is a 25 percent chance the child will be affected by inheriting two abnormal genes, a 25 percent chance the child will be neither affected nor a carrier, and a 50 percent chance the child will be a carrier who typically shows no symptoms.

After Jessica was diagnosed, testing revealed that two of her brothers are carriers, while her sister is unaffected. Two brothers have not been tested.

‘An eye opener’

Doctors at NIH referred the family to Edwin H. Kolodny, a pioneering Tay-Sachs researcher who is currently a research professor of neurology at NYU School of Medicine. Judy said Kolodny, one of the first scientists to describe late onset disease, was encouraging and realistic as he prepared them for what lay ahead.

Treatment for LOTS is largely supportive. Jessica is enrolled in a long-term study at NIH and has participated in a research trial run by Lau at NYU of a drug not approved in the United States that may lessen Tay-Sachs symptoms.

“Jessica is very thoughtful,” Lau said. “She has good organizational skills and is quite independent and eloquent.” Lau added that she does not show signs of impaired judgment that can accompany the disease.

Jessica can no longer walk without the use of leg braces and two canes; if she doesn’t use them, her legs buckle. Her arms are weak and she does exercises daily and rides a stationary bike. Speech therapy has been helpful for slurred speech, which is common among late onset patients.

For her mother, the diagnosis of Tay-Sachs has been “an eye opener.” Jessica’s siblings, who include two nurses and an emergency medical technician, have been supportive and helpful.

“My biggest fear was: ‘How am I going to live with this? How am I going to watch this happen?’” Judy said. “The main thing is that we weren’t going to lose her.”

From Jessica’s perspective, one of the hardest things about living with her disease is the inability to drive. “The most important thing is not to give up,” she said. “Keep going.”

NYPD cops used an apparent chokehold while roughly arresting a man on a Queens boardwalk Sunday, shocking video shows.

The disturbing scene unfolded at 8:45 a.m. near Beach 113th St and Ocean Promenade in Rockaway Beach in the NYPD’s 100th Precinct. The officer who used the apparent chokehold, David Afanador, was suspended without pay later Sunday.

“While a full investigation is still underway, there is no question in my mind that this immediate action is necessary,” NYPD Commissioner Dermot Shea said. “We are committed to transparency as this process continues.”

Police also released footage from Afanador’s body-worn camera which shows three men taunting and insulting the officers for about 10 minutes before one of them approached one of the officers, and was taken down.

“This matter is taken extremely seriously,” the NYPD said in an official statement.

As four uniformed officers restrained the man — who was face-down on the ground — a bystander yelled: “Yo, he’s choking ‘em, let ‘em go!”

One of the officers had an arm wrapped around the man’s neck, the video shows.

“Yo, he’s out, he’s out, he’s out!” another man says as the officer pulled the arm away from his neck.

One of the cops at the scene, identifiable by his shield number as David Afanador, tells the man recording with his phone, “Back up.”

The man recording responds, “Yeah, f— you, f—you, Alfredo.”

The man was led away from the scene by officers moments later, an NYPD spokesman said.

Police declined to say Sunday why the man was being arrested or what charges he’ll face. A source said cops were responding to a call for an emotionally disturbed person.

His lawyer, Lori Zeno of the Queens Defenders, identified him as Ricky Bellevue, and said he’s still recovering at Jamaica Hospital.

“I want the officer who put him in a chokehold to be in the cell next to him,” she said. “This guy should be charged criminally, and fired.”

She said he faces disorderly conduct, obstructing governmental administration and resisting arrest charges.

Mayor de Blasio on Sunday called the video “very concerning,” and later praised the swift police action in the case.

Today was the fastest I have EVER seen the NYPD act to discipline an officer,” de Blasio tweeted. “Within hours: Immediate suspension; Body camera footage released; Discipline process initiated. This is how it needs to be.”

The officer’s bodycam video shows Bellevue and two others taunting a group of officers on the boardwalk for 10 minutes while the cops appear to laugh it off.

One man, who’s not wearing a shirt, says to an officer, “Confederate-flag-wearing motherf—-er son, what’s your name?… Go ahead, say something stupid. Say something stupid.”

The scene takes a turn when Bellevue appears to grab something, then tells a cop, “You scared, you scared?”

One of the belligerent men tries to hold Bellevue back, but Afanador lunges forward and grabs him, taking him down.

Later, with the bodycam still recording, Afanador tried to explain what he did to a woman on the scene.

“They were all talking all types of crazy stuff to us. We did nothing. I don’t care. Anybody can say whatever they want to us,” he told the woman. “What changed everything is when he grabbed something and squared off, and was gonna hit my officer who’s standing over there.”

He continued, “That’s when everything changed. The minute I saw him flex on him, that’s when he goes down, cause we don’t get hurt and we’re not gonna leave somebody violent out here who might do that to one of you or another innocent person.”

Bellevue’s twin brother, Ashley, became visibly distraught as he viewed the videos.

“Those cops could have really hurt my brother. He couldn’t breathe. They could’ve killed him,” he said. “In the video I don’t see that he did anything? The cops just jumped into action. He wasn’t a threat, he didn’t have a weapon. What are they (cops) practicing, what are they being taught? They could’ve treated him a little more fairly.”

After his arrest, Bellevue told police he is bipolar. His brother said he was in an outpatient program — he didn’t specify what kind — that got shut down because of the coronavirus.

“He’s a good man, and he doesn’t bother anyone and this could’ve all been avoided. Some things just have to change,” Ashley Bellevue said.

Afanador was caught on video with another officer, Tyrane Isaac, beating and pistol-whipping a 16-year-old suspect in August 2014 so severely the teen suspect’s teeth were cracked.

In that incident, the officers — both assigned to the 77th Precinct’s anti-crime unit — were chasing Kaheem Tribble after he was seen throwing away several plastic bags allegedly containing pot.

Video shows the teen slowing down to face the officers with his hands up before they beat him, prosecutors alleged. Afanador was accused of using his service weapon to crack Tribble’s bottom teeth, as Isaac punched him while trying to handcuff him.

Afanador testified at his trial in Brooklyn Supreme Court in 2016 that he didn’t mean to cause Tribble’s injuries, and the teen was caught in lies on the stand.

Brooklyn Supreme Court Justice Danny Chun found Afanador and Isaac not guilty.

“He, like so many others, are an absolute disgrace to the police department. They’re criminals themselves,” said Amy Rameau, the lawyer who represented Tribble in that case, as well as several plaintiffs in another lawsuit against the two cops. “David Afanador is a thug.”

“I can’t say I’m shocked,” Rameau said.

The city paid Tribble’s family $83,250 in 2019 to settle a civil lawsuit, public records show.

The use of chokeholds like the one the Queens cops apparently used Sunday has become a flashpoint in recent years, especially in New York City.

Activists started pushing to ban the tactic after Eric Garner was killed on July 17, 2014, after NYPD Officer Daniel Pantaleo put him in a chokehold and wrestled him to a Staten Island sidewalk.

Garner, who was black, pleaded “I can’t breathe” at least 11 times as he struggled to stay alive.

The three-word phrase became an instant slogan for racial justice campaigners but Pantaleo was cleared of criminal charges in the Garner killing. He was eventually fired from the NYPD after a tortuous disciplinary process.

Despite the outrage over Garner’s death, NYPD officers continue to use chokeholds at an alarming rate.

A report from the New York State Assembly said 996 New Yorkers were placed in chokeholds by the NYPD in the nearly six years since Garner’s death.

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It took another police killing more than 1,000 miles away to finally get New York State to ban chokeholds.

George Floyd was choked to death on May 25 by Minneapolis Police Officer Derek Chauvin, who held his knee against the unarmed man’s neck for an excruciating 8 minutes and 46 seconds.

The murder of Floyd ignited a nationwide protest movement demanding police reform and racial justice. After years of inaction, lawmakers in Albany quickly passed the Eric Garner Anti-Chokehold Act this month.

Gov. Cuomo signed it as part of a package of police reform measures.

The bill makes it a class C felony for a police officer to injure or kill somebody through the use of “a chokehold or similar restraint.” The crime is punishable by up to 15 years in prison.

With Wes Parnell, Rocco Parascandola, Graham Rayman, Dave Goldiner and Shant Shahrigian