Baby Leah tenses and contorts in her crib at Mattel Children’s Hospital UCLA. A visit to her in the room requires suiting up in a gown, gloves and mask to ensure she doesn’t become sick in her fragile state. Zev and Frani Esquenazi’s little girl, who is named for Princess Leia from the “Star Wars” films, has received multiple spinal taps, MRIs and EEGs, and is breathing through her trachea. Her movements are erratic.
After employing the expertise of more than 40 doctors and a round-the-clock nurse service, the Esquenazis are no closer to solving the mystery of Leah’s illness than they were when she was admitted to the hospital months ago.
Leah has outlasted many dark predictions.
“On Frani’s first Mother’s Day, the doctor told her that the baby was probably not going to make it,” Zev Esquenazi said. “That was the gift she got on Mother’s Day. And, of course, she outlasted the doctor’s [prediction].”
Housing Leah in one of the best hospitals in the country is essential to her survival, but it’s not cheap. Zev Esquenazi said a social worker said the medical bills are hovering around $2 million so far. In order to be with their daughter at all times, the Esquenazis have stepped away from their jobs temporarily. Friends and strangers alike have come to their aid. In this case, their love of “Star Wars” is on their side.
Zev is a member of the 501st Legion, a worldwide organization for “Star Wars” costume enthusiasts. When Leah first became sick, he told the story to his fellow Facebook friends and “Star Wars” fans. Without asking, the 501st Legion began organizing and raising money.
A Facebook group called “May the Force Be With Princess Leah” was created and now has nearly 4,000 fans. A close friend and prop builder, Jason Watson, created a donation page for the family, which Zev Esquenazi said has been invaluable. “Star Wars” stars, such as actor Peter Mayhew (Chewbacca), Lucasfilm marketing head Steve Sansweet and “Clone Wars” voice actor Stephen Stanton have helped get the word out. Donations of props and memorabilia from Mayhew, Stanton and other supporters have been auctioned off in support of the Esquenazis. In less than 30 days, Zev said, more than $30,000 has been raised for the family. Chai Lifeline also helped with rent and food when the family needed it the most.
“Really, if it wasn’t for them coming to our aid, we would literally be out on the street,” Zev said.
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Donations help pay for food, gas and the large insurance deductibles that the couple has been struggling to cover since Leah became sick. What’s more difficult is the unknown nature of Leah’s illness. The Esquenazis have applied for aid from organizations such as California Children’s Services but have had little success.
“That’s the other issue that we’ve been having: that you have these organizations that help kids with cancer or help kids that have (muscular dystrophy) or Parkinson’s,” Zev said. “But because she is not officially diagnosed with anything, we can’t get the help that we need.”
One doctor at UCLA speculates that between 10 and 20 percent of such neurological illnesses go undiagnosed. Frani Esquenazi said she hopes Leah can inspire and raise awareness about situations similar to hers.
“People don’t know that so many kids go through this until you go through it with your kid,” Frani said. “You feel like the only person this is happening to, but there are so many families out there.”
George Lucas’ Princess Leia asked for help from her only hope, Obi-Wan Kenobi. But the Esquenazis’ 5-month-old Princess Leah in the pediatric intensive care unit needs the help of more than just one person. Support from around the world has poured in for Leah and the Esquenazis, but more is needed.
To read updates from the family about Leah, visit princessleahdiaries.blogspot.com. Donations through PayPal can be made directly to the family through the page. To avoid PayPal fees, donors can also send checks to the address on the blog. Supporters can also like the Facebook group “May the Force Be With Princess Leah.” Monetary donations help a lot, but Zev Esquenazi said he doesn’t want supporters to feel like they need to donate money.
“For me, hope and prayers are just as important as money,” he said.
