One little boy focus of support from Cirque, St. Baldrick’s and Children’s Specialty Center

By John Katsilometes

Saturday, Feb. 21, 2015 | 2 a.m.

The little boy with the tousled brown hair is seated in a grown-up chair, staring with laser-like focus into an iPad as he plays the video game “Angry Birds.” This kid is an “Angry Birds” wizard. His fingers fly across the screen as he sends a ceaseless stream of tiny birds crashing into the fortresses of unsuspecting piggies.

This is the evident object of this game, and as the points mount, Elann shifts his body and kicks his feet. He’s wearing a pair of Batman sneakers, equipped with little lights that flash as his feet bounce against the chair’s wooden legs.

“You’re good!” his mother, Leslie, calls over to him. The little boy looks up with wide eyes, nods quickly, and continues his peccary assault.

Speaking in a pronounced French accent, the mother returns to talking of her son and his rare, insidious health concerns.

“Elann used to be treated intravenously, and it was awful for him, to have needles put in to his arm,” she says. “Now he has a port, and it is a good port.”

Sami, the father, leans toward his son and asks, “Can you show us, Elann?”

At that, the little boy, just weeks before his fourth birthday, sets aside the game and tugs the collar of his hoodie. He draws your index finger to a small, circular indentation just under the skin’s surface on the right side of his chest. You press gently and feel this pliable, plastic ring. This is the port where Elann’s monthly prophylactic, or preventative, infusions are administered. These treatments keep him strong and healthy enough to behave like a normal kid.

As he leads you to that small circle, the little boy grins as if revealing a secret treasure, maybe the meaning of life itself. And for Elann Saula, who has fought a mysterious array of illnesses for most of his young life, the port under his skin is exactly that.

•••

Foremost, the Saulas are members of the tightly bonded Cirque du Soleil family in Las Vegas. Originally an acrobat and musician from the town of Evry in the southern suburbs of Paris, Sami is today an acrobat and multi-instrumentalist in the production at MGM Grand. In a pattern to be repeated during his life and career in Las Vegas, Sami adjusted to fate after a rupture of the anterior cruciate and partial tear to the meniscus of his right knee about 10 years ago to remain a vital member of the “Ka” stage show.

Though a largely unseen performer who blends in the setting of the spectacle at the MGM, Sami is unique to artists in Las Vegas or anywhere as one of the few Cirque cast members who has been trained in both acrobatic and musical media. In January, he released a stirring CD of world music, titled “Awaken,” the proceeds of which are being used to help defray Elann’s mounting medical bills and the family’s household needs.

The CD represents the family’s perseverance in fighting with their son, but it is also a wonderful collection of world-music numbers from what is best described as a band of gypsies. As “Ka” Music Director Richard Oberacker describes the release, Sami “leaps from style to style, breaking cultural boundaries and nationalities with the gleeful abandon of a child who has yet to understand that people from other places might be considered ‘different.’ ”

The passion is evident in Sami’s dozen original compositions.

“The music, it is from the heart, but we need to sell the music to help Elann and so we won’t need so much help from our friends,” Sami says. “We have great friends here, but we are more comfortable with giving and helping than needing help.”

During their time in Las Vegas, the Saulas have started their own family, beginning with their daughter, Kina, now age 6. The Saulas became close to the family of the late Sarah Guillot-Guyard, who died onstage in June 2013 after falling from the show’s Final Battle scene. Guillot-Guyard, who Leslie says “became like a member of our family, like a sister,” had spent countless hours at the Saulas’ home and, over time, became one of the caretakers of little Elann when he fell ill.

“We have strength from people around us,” Leslie says. “It is almost like magic, how we have been able to keep up with medical bills, food costs, clothes. ... But we want to come to a time when we are not so dependent on others.”

The family’s total medical bills for Elann’s care have easily surpassed $1 million — $350,000 of that figure amassed just in the first six months of his life. The Cirque du Soleil insurance benefits have taken the brunt of that responsibility, but the family still has paid tens of thousands of dollars out of pocket and is still in for nearly $8,500 in loans made by their friends from Cirque. Added to this debt is this unfortunate bit of timing: Sami’s car broke down two months ago, and the loaner he has been using will need to be returned in a couple of weeks. So the family needs a new car too.

“That is why this CD is so important,” Sami says. “We do not want to just be asking for donations. We want to sell our art, our music, and be able to work out of this.” (The CD is on sale at Sambalatte at Boca Park and also at www.SamiSaula.com.)

In an act of juggling worthy of a Cirque production, Leslie has managed to keep the family’s finances from falling apart by negotiating on the phone with various insurance carriers, utility companies and the like. “You find how long some can wait and how patient they will be,” she says, smiling slightly. “We do not want to seem like we are complaining, but we do have three years of doctors’ bills.

Leslie also has suffered a medical crisis, in May 2013 when she underwent lumbar disc replacement surgery and a fusion of her spine, leading to more stress on the family.

And, compounding that challenge, Sami is permitted to work in the United States as he has been issued a work visa. But he does not have a “green card” establishing full residency in the U.S., and under these provisions Leslie is not allowed full-time employment. She is allowed to live with her husband but says with a chuckle, “I am only allowed to exist here. I am allowed to be here, to care for my family and to smile.” The Saulas are working toward a green card for Sami, a process that can take years and cost several thousands of dollars, and the time and resources are scant right now.

One of the family’s closest friends, former “Ka” artist Erica Linz, is among those who have rushed to provide support to the Saulas.

“I think when you have a friend dealing with their son spending six months in ICU, the tribe does become a family,” she says. “I have seen in Leslie this woman who is a soft spirit turning into a warrior for her son.”

Linz stepped in to help the Saulas, both born and raised in suburbs of Paris, better understand and absorb complex medical terms conveyed in English. A performer in “Ka” for six years before breaking off to pursue her own career, during which she has helped found the charity production Circus Couture at the Hard Rock Hotel, Linz was eventually asked to serve as a nanny for Kina.

“This little girl would come in and hang backstage, and I saw evidence of an old soul,” Linz says. “I came in to help the family when Sami went back to work in the show and I’d just left ‘Ka.’ I walked into the house, and there was Kina, doing the laundry on her own.”

Kina was 3 at the time.

Asked how she feels about her little brother’s health struggles, Kina thrusts her hand and turns her thumb down. Asked if she loves her brother, that thumb turns up.

•••

For years, the Saulas had been a family that was remarkable for Sami’s participation in “Ka,” and for his musical artistry. He’s appeared at Composer’s Showcase, unspooling songs from “Awaken” by playing the caisa, a drum fashioned from steel and wood and played as if it’s a traditional steel drum flipped upside-down.

The family’s life was shaken a little more than three years ago in a wholly unexpected turn of events.

Elann Saula was born Feb. 18, 2011, and enjoyed “six perfectly happy months” as Leslie remembers, until his health took a terribly alarming turn. It started with the infant suffering from acute diarrhea, up to 10 times a day. He was skinny, weak and without any certain diagnosis from any of eight specialists assigned to his case.

There was a fear Elann might be the victim of an aggressive form of gastric flu, leukemia or possibly a new form of lupus. The original diagnosis was a rare form of intestinal lymphangiectasia, which robs the body of the proteins needed to sustain a strong immune system. But that is not his diagnosis today.

“Elann is suffering from abnormalities of his immune system,” says Dr. Alan Ikeda, a pediatrician at Children’s Specialty Center of Nevada who has treated Elann throughout his illness. “He can’t fight off the usual things like the common cold. He’s had abnormal reactions of his immune system, causing acute diarrhea.”

The medical term used by Ikeda to describe Elann’s condition is hypogammaglobulinemia, a disorder in which the body creates a level of antibodies too low to sustain a normal immune system.

What led the Saulas to Ikeda, and to the Children’s Specialty Center, is some of the “magic” the family so frequently describes.

The Specialty Center, the only nonprofit pediatric cancer outpatient treatment facility in Nevada, is funded in large part by money raised during the annual St. Baldrick’s Day head-shaving fundraisers conducted each year around Las Vegas. The Las Vegas offshoot of the national fundraising campaign was founded in 2007 by McMullan’s Irish Pub owners Brian and Lynn McMullan, who in 1997 lost their 2-year-old daughter Kyra to a brain tumor.

Since that first event, St. Baldrick’s Day has grown into one of the year’s best-supported charity events in Las Vegas, raising more than $500,000 last year. Last fall, St. Baldrick’s raised $235,000 for the center, which is vital to sustaining the facility’s infrastructure and programs. The center’s own Cure 4 the Kids Foundation is hosting the first St. Baldrick’s event at 2 p.m. Sunday at L’Oracle fitness center, 7020 W. Warm Springs Road, Suite 170-180, in Las Vegas.

“We would not be where we are if it were not for the funding St. Baldrick’s has provided us,” Cure 4 the Kids Foundation spokeswoman Dawn Marie Pavuk says. “It is the largest supporter of our facility outside the U.S. government.”

On March 7, events are set for throughout the day at McMullan’s, New York-New York’s Brooklyn Bridge and Nine Fine Irishmen, Ri Ra the Irish Pub at Mandalay Place, and Vinyl at the Hard Rock Hotel.

Ikeda is having his head shaved Sunday and also might join Sami for a musical number, as the doctor plays a pretty fair ukulele (Ikeda is originally from Hawaii and graduated from John Burns School of Medicine at the University of Hawaii).

Ikeda was brought to Las Vegas through a St. Baldrick’s fundraiser four years ago, when the Saulas were actually among those supporting the event at L’Oracle. When there was a late push for shavees that day, both Sami and Leslie volunteered to shave their heads to help pay for a new doctor coming in from Los Angeles who they had never met. Elann had not even been born.

That doctor turned out to be Ikeda, the man who now treats Elann.

“I don’t know what to say about this,” Leslie says. “It is a miracle, right?”

Care at the center is something of a miraculous process. Elann spends between six and eight hours once a month at the clinic, and by now he knows his way around the place. When he walks in, he darts to what is called the Infusion Lounge to set up one of the dozen small recliners so he can watch cartoons playing on a flat-screen TV hanging overhead. Then he enters a treatment room, where he is lifted to a sitting position.

This is where your St. Baldrick’s money goes to work. Elann has been through many of these infusions, in which a solution of steroids followed by IGG antibodies (proteins produced by the immune system that fight bacteria, viruses and toxins) are slowly introduced to Elann’s bloodstream over that lengthy process.

But even though he has had a port installed to make these injections far less painful, the mere sight of a needle reminds the little boy of the times when he was jabbed in his arms. “Nooooo!” he calls out when pediatric nurse Steve Funk walks into the room. As a distraction, everyone nearby begins chewing bubble gum and blowing bubbles.

And in a bit of sleight-of-hand artistry that befits Mac King, Funk turns his back to the child and slides next to him, concealing the needle. Then Elann stills, and the needle is gently pushed into the port. That is where it will stay for the next six hours, at least.

“It is incredible, if you had seen him before, with them trying to stick him in the arms with the needles,” Leslie says. “It took five people, five adults, to keep him still.” She remembers the days when Elann was just 7, 8 months old, with a feeding tube down his throat, pulling the plastic piece completely out of his body.

“He is strong, I think, because of the steroids,” Sami says. “We see signs, like little hairs on his back, that are not like a normal child.”

Elann will continue to undergo these monthly treatments for at least another two years. Then, they will have to stop to see if his body, his compromised immune system, can survive on its own strength.

Thus, Elann’s seemingly strong physical condition is medically, and even artificially, maintained.

“We are nervous about what will happen when we have to take him off the treatments,” Leslie says as the infusions begin once more. “But we need to know if he can be like a normal kid.”

As she talks, Elann is resting happily in his recliner, the TV looking down at him. He’s playing the video game once more, his mind as free as a bird, his body enveloped by the very best of care and by love from everywhere.

Follow John Katsilometes on Twitter at Twitter.com/JohnnyKats. Also, follow “Kats With the Dish” at Twitter.com/KatsWiththeDish.