“I’m Aviva, Chief Visionary Officer of Aviva Productions,” she warbles in front of a microphone specially adjusted to fit her diminutive size. An adorable, slightly hoarse laugh. “Which is kinda funny, since I can barely see at all!”
It’s just the next wonderful step for 12-year-old Aviva Krainess, who navigates life through illness and chronic pain with a constant smile on her face.
She was the baby of the family – a petite, shy six-year-old when her family made the big move from Cleveland to Israel in the summer of 2006. Three months later, when mom Leah saw that Aviva had developed some sores on her feet, she consulted with a dermatologist. Kids being kids, she expected to walk out with nothing more than a prescription for some cream. Instead, the doctor ordered intensive blood work, followed by a second, and then a third round of tests.
“The dermatologist knew the problem right away as soon as she saw Aviva,” Leah tells me, “But she didn’t want to tell us until she had confirmed it beyond the shadow of a doubt.”
At seven years old, Aviva had just suffered her first stroke.
The diagnosis came back: lupus, a chronic autoimmune disorder in which the body attacks its own tissues. The roller coaster had just begun. A top pediatric rheumatologist confirmed the diagnosis by noting the arthritis in Aviva’s fingers and the butterfly-like markings that had begun to spread across her face in the sun. She prescribed a low-dose drug used to treat lupus and sent the Krainesses home. But a couple of months later, when Aviva began to vomit and experience severe back pain, her parents rushed her to the emergency room when suddenly she was unable to move her body. At seven years old, Aviva had just suffered her first stroke.
“They rushed us by ambulance to Ichilov hospital,” Leah remembers. “They thought maybe she needed brain surgery to relieve the clot.”
But an MRI showed no operative condition in the brain, rather the doctors suspected Central Nervous System Vasculitis, a condition where veins in the brain swell, causing the person to be more susceptible to blood clots. The lupus was making itself known in her brain in the form of vasculitis, and now the medications began in earnest. Major doses of steroids, then rounds of chemo, but still Aviva was having strokes. Prayers for Aviva Malka bas Leah pierced the heavens around the world, as her strength waned and the paralysis took hold.
“And then the medical clowns came!” Aviva chirps up from her perch at the head of the dining room table, as though we’ve just been retelling the rollicking adventures of a recent birthday party.
“No,” Leah laughs. “Then you went to Alyn.”
With Spirits Intact
Alyn Family Hospital, the only hospital of its kind in Israel, is one of the world’s leading facilities in pediatric rehabilitation. Thankfully, Aviva arrived at Alyn very soon after her strokes had hit, giving her the best chance at recovering mobility.
Eventually, Aviva was doing outpatient rehab work – hydrotherapy, animal therapy, learning how to walk and talk again. “They would tie the parrot’s birdseed a few rungs up just a little out of Aviva’s reach to motivate her to strain upwards, while they put weights on her left leg, which needed strengthening. They made her crawl in to feed the snake, which was her favorite,” says Leah. After a strenuous few months, everyone dared to hope that Aviva could go back to school and resume life sort of like a regular ten-year-old. But God had other plans.
“We took a trip to the zoo and suddenly Aviva started throwing up every couple of feet. I called the hospital, asking if I should bring her in but they said, ‘Nah, it’s just a virus.’ It wasn’t letting up so I brought her down to Emerg but they told us to go back home. That next day she collapsed to the ground and was completely unresponsive, staring blankly into space. It was probably the scariest experience of my life.” It was an experience Leah will never forget – and which Aviva will probably never remember.
Aviva was quickly intubated and put into a medically-induced coma. Scans showed her brain was very swollen and there was little the doctors could do.
She had terribly graphic hallucinations, brought on by the medications. It was, of course, an incredibly stressful time for the Krainesses, but a few days later, Aviva opened her eyes again.
“Did I miss the coming of Moshiach [the Messiah]?” was the first thing she wanted to know. “Did my sisters get married?”
A veteran of extended hospital stays, Aviva was now hospitalized for months, alongside patients with serious medical problems. It was difficult, but Leah, who stayed at Aviva’s side nearly 24/7, and Aviva herself, were determined to make it through with spirits intact.
The doctors can’t get over how she’s been through so much and yet she’s so positive and happy.
“We would take it one day at a time,” Leah explains. “We helped each other through things. We’d say, ‘Oh! We got through another test! Have we had more tests than [our forefather] Avraham?!’ One night, I was sleeping on a futon and it was killing my back and I started complaining, and Aviva said, ‘Just like I have tests, you also have tests. This is also for the good.’ We build each other up. And we’d try to make other people laugh.”
“In the hospital, the clowns didn’t want to leave Aviva,” adds her father, Leib Chaim. “They all loved her. And all the doctors are so impressed with her. They can’t get over how she’s been through so much and yet she’s so positive and happy. Her primary doctor, Dr. Navon, said, ‘Anyone with your level of pain wouldn’t even be able to get out of bed in the morning. But you? You’re always smiling. How do you do it?’”
“I’d leave Aviva in the Art room at the hospital to run some errands,” Leah continues, “and she would start schmoozing with the patients and their mothers and have them all in stitches! Just the other day I was in the store and a woman said, ‘How’s Aviva? I really want to get in touch with her. She gave me so much inspiration!’ That’s Aviva.”
After the grueling hospital stay, Aviva returned to Alyn. But this time, her deficits were much more intense. She could barely speak. Her memory was deeply affected by the seizure-like episode she had suffered, and her gait was very limited. It was back to square one, but Aviva was hardly daunted.
Step by arduous step, Aviva regained her abilities to walk and talk, with an attitude so upbeat it had everyone around her shaking their heads in wonder. And when the next speed bump in her winding road hit, Aviva took it with the same equanimity with which she’d navigated the obstacle course until now. High pressure in her eyes due to the steroids she was taking for the Lupus led to the development of glaucoma, and Aviva lost sight completely, save for a “pinhole” view in one eye which a highly skilled surgeon, Dr. David Walton, at the Boston Children’s Hospital managed to salvage after multiple surgeries.
“When Aviva lost most of her vision, she said, very matter-of-factly, ‘That’s why Hashem gave me two eyes. So if I lose vision in one, I still have the other!’” Leib Chaim marvels.
She has worries, she confides, but despite her serious medical condition, most of what preoccupies Aviva is just the mainstream adolescent concerns: friends, grades, and the occasional bad hair day. Still, she tells me candidly, she wonders whether she’ll be able to get married.
“But my teacher [for the sight-impaired] told me that an equal number of seeing people and blind people get married!” she insists, before trotting off to bring me some amazing samples of her work from the ceramics class she’s been taking.
“Aviva never says, ‘I can’t do it.’ ‘I’m limited.’ She never finds excuses for her disease or her weaknesses or her lack of vision,” Leah muses proudly. “She used to be shy and introverted, but today she’s strong and she communicates her needs and if something is bothering her. In the morning, it would take her a few minutes to stand on her legs – that’s how bad her pain is at times, but she’d still go to school. She’d say, ‘I need to learn Torah!’”
Strength and Devotion
Much of Aviva’s resilience and strength comes from her parents, who have supported her and cheered her on with incredible devotion. “Sometimes, when my legs were hurting I would ask for a wheelchair,” Aviva says. “But then my mother would say, ‘If you get a wheelchair then you’ll never push yourself to walk again.” For longer distances, Aviva famously zips around town in her motorized scooter, usually with her mother behind the wheel.
Aviva’s illness and her unique ways of coping with it – far beyond her years – have touched people around the world. A family who read about Aviva some time ago requested to meet her on their recent trip to Israel, where the husband insisted on receiving Aviva’s blessing. An anonymous donor sent her a laptop computer and, more recently, an iPad, on which she shows me her own hand-drawn logo for her future enterprise. “In the beginning, I wanted to be a painter,” Aviva says confidently. She pauses, cocks her head, then lets fly a surprise revelation that makes her mother’s mouth drop open, kvelling. “But now I want to be a speaker, because I already give people a lot of chizuk [inspiration], so I want to spread it even more!”
Her smile is a constant companion, even at the hardest of times.
And does she ever! Aviva shares a Friday afternoon telephone date with the rabbi of her congregation, who regularly asks his young friend to bless him, and patiently answers the question she has frequently posed: “Why?”
“I think Aviva has come to accept what God has given her,” Leah says.
When Rabbi Benjamin Blech, a frequent contributor to Aish.com, became sick, Aviva wanted to contact him to hear his perspective on illness. Providentially, he came to Israel just a short time later and she met with him in person. She found his response to her question of “Why?” very satisfying. “People who get sick are God’s messengers,” Rabbi Blech told Aviva. “Our job is to show everyone how to handle life’s tests. Instead of complaining, we show the world how we have faith that God’s Plan is for the best. We’re role models.”
Aviva embodies this mission. Her smile is a constant companion, even at the hardest of times. In a couple of weeks, Aviva will be hosted by the National Institute of Health, in Bethesda, MD, where researchers are interested in her very rare case and she may be eligible for a new treatment, but the prospect of eight hours of testing a day doesn’t seem to faze her. How does she do it? I want to know.
Aviva offers this sage advice: “Sometimes thing are hard, so I get sad. And then I get up. Because it’s better to be happy than to be sad, because you can get through life a lot better when you’re happy. You can’t really pull yourself up if you’re sad.”
“It’s all in the mind!” she finishes off with a laugh referring to her latest endeavor – and her father’s brainchild – called Mind Theatre which catapulted Aviva into the role of Chief Visionary Officer and unveiled her pretty amazing acting talent. As Aviva’s blindness set in, Leib Chaim realized the unfortunate dearth of entertainment options for sight-impaired people – especially children. He harnessed Aviva’s unbounding inspiration and can-do spirit, to create an audio based production for children that’s like watching a Hollywood movie but the pictures are created solely in the listener’s own mind.. “Isn’t that COOL!” exclaims Aviva in the video she created for the crowdfunding page to get the project up and running with her first production, The Emperor’s Secret. Partnering with Mercava a non-profit that assists organizations and individuals in turning ambitious ideas into reality, with Aviva at the helm, the goal is to create a new genre of entertainment – Hollywood-quality acting, plots, and effects, using only audio – sans visuals.
“Darkness has given me the gift of light, real light,” Aviva says, in the video. “I can enter a world of endless imagination and see beyond limitations. And with this light, I just knew that despite my blindness...no, because of my blindness, I can enjoy stories in a whole different way. And I would like to share that with the whole world.”
She’s a little girl, making a big impact, and while Aviva’s story is far from over, one theme leaps off every page: It’s all about attitude, and she’s going to make hers sunny, and spread it around the planet.
To see Aviva’s video, hear the Mind Theater trailer or for more information about Aviva’s project, visit her crowdfunding page at http://www.themercava.com/projects/mindtheater