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Tour de ‘Force’: Star Wars fans unite for ailing infant

What single individual could compel rebels, droids, bounty hunters, Jedi Knights, Imperial Stormtroopers and even Darth Vader himself to unite and fight for a common cause? A tiny tot with a mystery ailment, known to those who love her as “Princess Leah.”
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In a galaxy polarized by age-old conflict, what single individual could compel rebel forces, droids, bounty hunters, Jedi Knights, Imperial Stormtroopers and even the Dark Lord of the Sith himself, Darth Vader, to unite and fight together valiantly for a common cause?

The answer, it turns out, is a tiny tot known to those who love her as “Princess Leah.” The cheerful 4-month-old has spent more than half of her life hospitalized because of a mysterious disorder that a team of at least 40 doctors can’t identify.

Friends of Leah’s parents and plenty of strangers — most of them Star Wars fans — have been using the Force of social media to see whether anyone, anywhere in this solar system, might have a good guess about what’s been causing Leah’s constant and erratic muscle and eye movements. And they’re doing more than that — through donations, raffles, social media initiatives and more, they’ve so far raised more than $20,000 for the family’s daunting medical expenses.

“To have the support of my fellow nerds right now — it’s just amazing,” said Leah’s dad, Zev Esquenazi. “I remember as a kid I used to get beat up because I used to bring my Star Wars action figures to school, and now these are the same people who have come to my aid and are trying to help a little girl they’ve never met before.”

It’s true that ardent Star Wars fans have a reputation for strenuous nerdiness. But once you dig down beneath their blaster-charred Stormtrooper armor, their hearts are as soft and fuzzy as an Ewok’s fur. Esquenazi and his wife, Francesca, are well-known in the Star Wars community for the costumes and props they make together — most notably, their high-quality helmets. The couple are deeply involved in charitable Star Wars costuming clubs that raise money and organize whimsical events for hospitalized children and their parents. Last year alone, the Los Angeles couple donated $5,000 worth of helmets and other props to charity.

They didn’t imagine they’d ever be on the receiving end of the Star Wars community’s largesse.

“You never think that something like this is going to happen to you,” Zev Esquenazi said. “And when this baby was born, this precious little darling, we never anticipated that this could happen. She was fine.”

Zev and Francesca Esquinazi
Zev and Francesca Esquinazi

A looming mystery
Little Leah Esquenazi was a looker from the day she was born, Feb. 17. She had a riot of dark hair and huge eyes, and she began smiling at people right away.

Leah is named after her dad’s sister. For the infant’s Star Wars-enamored parents, it was a happy coincidence that this “Leah” is pronounced exactly like the name of Princess Leia from the movies.

The Esquenazis were concerned because Leah had some noisy, squeaky breathing when she was born, but doctors assured them that this was common — something she’d outgrow as she got older. Other than the sound effects, Leah really did seem OK.

Then, right around when she turned 1 month old, Leah began doing something that terrified her parents. Her eyes and her whole tiny body began moving uncontrollably. At times every muscle in her body seemed to tense up. Her parents rushed her to the emergency room, where a nurse said it looked like she may be having seizures.

Leah wasn’t having seizures, it turns out. Instead, she began engaging in an incessant and mysterious dance — an ailment called chorea, which comes from the Greek word for “dance.” Her breathing difficulties also became life-threatening. A neurological disorder that causes involuntary movements, chorea is sometimes linked to the inherited Huntington’s disease.

In the months following that first ER visit, Leah has had seven spinal taps, three EEGs, two MRIs, a muscle biopsy and countless other tests. She’s undergone procedures to widen her airway and improve her breathing; she now has a tracheostomy tube in her neck. She’s also had surgeries to remove cataracts that developed suddenly and recently in her eyes.

So far, Princess Leah has been as feisty and fearless as the Star Wars saga’s Princess Leia. In the face of every painful procedure and every cumbersome tube, she keeps right on smiling.

“She’ll open her eyes and, boom, just smile at her mom,” Zev Esquenazi said, starting to cry. “That’s how we know she’s OK sometimes.”

Doctors have not been able to determine what’s been causing Leah’s unusual muscle and eye movements, although they’ve ruled out some scary possibilities, such as cancer and mitochondrial diseases. A drug called Tegretol they introduced into the mix last week seems to have slowed the tempo of her dance.

“It’s very unsatisfying, actually, to end up in this situation where you know something is going on but you can’t determine exactly what it is,” said Dr. Lekha M. Rao, a pediatric neurologist at UCLA Medical Center, where Leah is hospitalized.

“Unfortunately, in neurology, we end up getting a lot of cases like this.”

Leah’s mom and dad have been living at the hospital round the clock with their daughter, and they’ve barely been able to work in recent months. Zev is a freelance voice-over actor; Frani works for Riot Games, a video-game company that has allowed her to take the time she needs. The Esquenazis have medical insurance, but it isn’t enough to cover the extent of their daughter’s ongoing and enigmatic medical issues.

“I mean, what could this involve in the future? Is she going to be a child with disabilities?” Frani said. “This particular hospital visit is probably not the end.”

‘The very best in people’
When Zev first started dating Frani seven years ago, he was afraid to tell her just how deep he was into Star Wars. The collections, the props, the soundtracks — how could he ever confess such hopeless geekiness to this gorgeous, funny woman?

Turns out he had nothing to worry about. Frani had always enjoyed the Star Wars films, and she readily helped him build a costume so he could join the 501st Legion costuming club. (For the uninitiated, members of this club dress up like the bad guys. Think Stormtroopers and Darth Vader.)

The pair later joined the Mandalorian Mercs, a club for people who dress up like the bounty hunters and freelancers of Star Wars (like Boba Fett, who hunts the Millennium Falcon in “The Empire Strikes Back”). They’ve also got plenty of pals who make and wear costumes as members of the Rebel Legion (the good guys, like Han Solo) and the Droid Builders (R2-D2, C-3PO and a whole lot more).

When this vast network of Star Wars enthusiasts learned via Facebook that the Esquenazis were dealing with a serious medical crisis, they mobilized. One close friend started promoting a raffle of rare Star Wars memorabilia and props on Facebook; another started a donation page; others created bracelets, patches and buttons; still others began a huge media push to draw attention to Leah’s condition.

Altogether, these efforts have raised more than $20,000 to help the family with their medical bills. “It’s a beautiful thing,” Frani said. “Who would have thought that this nerdy movie could bring out the very best in people?”

Leah’s plight has also attracted support from some well-known names in Star Wars circles. Stephen Stanton, a voice actor for the “Star Wars: The Clone Wars” TV series, gave the Esquenazis a generous check. Lucasfilm executives have been spreading the word about the family’s situation. And Peter Mayhew, who played Chewbacca, donated autographed copies of his books for the raffle.

Image: St. Jude 30th Anniversary Screening Of \"The Empire Strikes Back\"
LOS ANGELES, CA - MAY 19: Actors Peter Mayhew and Harrison Ford arrive to St. Jude's 30th anniversary screening of 'The Empire Strikes Back' at Arclight Cinema on May 19, 2010 in Los Angeles, California. (Photo by Angela Weiss/Getty Images)Angela Weiss / Getty Images North America

“Peter has been so supportive,” Frani said. “He friended me on Facebook. I’m like, ‘Oh my God! I’m friends with Chewy!’ ”

The media push may have resulted in one of the best gifts of all for the Esquenazis: A researcher who works closely with the Muscular Dystrophy Association has offered to include Leah in a gene-sequencing research study that wouldn’t have even been possible about a year ago.

“They will look at her DNA and map out the whole thing and see if there’s anything out of the ordinary,” Dr. Rao explained. “We can also compare it to other kids who have undiagnosed conditions.”

As the hunt continues to identify the cause of Leah’s condition, Leah’s parents are drawing strength from the support of all their friends and strangers from around the world.

“I’ll tell you something,” said Leah’s dad. “This whole thing with my daughter has restored my faith in humanity.” producer Alex Smith (a Star Wars fan) contributed to this report.

To find ways to support the Esquenazi family, see the box running within this story.

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