Elann Saula is a little boy with a lot of fight. But even he needs help in his battle against a serious immune-system disorder.
The 4-year-old Elann is the son of Las Vegas musician and songwriter Sami Saula, a performance artist and musician in the Cirque du Soleil production “Ka” at MGM Grand, and Leslie Saula. Elann was born with the disorder hypogammaglobulinemia (Hypo-gamma-globu-li-nemia), which prevents the body from sustaining the level of antibodies required for a normal immune system.
Since he was an infant, Elann has undergone intensive monthly infusions lasting as long as six hours each at Children’s Specialty Center of Nevada. The nonprofit facility treats children with such debilitating diseases as cancer and the condition from which Elann suffers. But the family has amassed high medical costs, and Sami is hosting an event to help defray those expenses.
Set for 7 p.m. Friday at Domsky Glass Studio (2758 S. Highland Drive in Las Vegas) is “Awaken — A Story Beyond Words,” a show featuring Sami Saula and his 12-piece backing band performing world music from Saula’s recent album, “Awaken.” (Tickets to the event are $35 apiece at the door or $65 for two online at SamiSaula.com/elann/)
Elann Saula’s story was chronicled in February, leading up to St. Baldrick’s Day, as that fundraiser is the leading source of financial support for the Children’s Specialty Center. Elann will need to undergo treatments for at least two more years. At that point, those arduous sessions will be suspended so doctors can determine whether his immune system is strong enough to allow him to live a normal life.
“We are nervous about what will happen when we have to take him off the treatments,” Leslie said in February. “But we need to know if he can be like a normal kid.”
Sami Saula is an accomplished acrobat and musician from Evry, France, which sits in the southern suburbs of Paris. He plays guitar and earth harp in the show and also has mastered the caisa, a melodic percussion instrument that looks and sounds like a steel drum flipped upside-down.
Folded into the fundraiser is a live glassblowing exhibition, with the piece being raffled off during the event.
Sami Saula was brought to Las Vegas in 2004 as “Ka” prepped for its opening a year later at MGM Grand. The family’s medical expenses have delayed his efforts to secure a green card to establish full residency in the U.S., an expensive and time-consuming process. Lacking full residency, Leslie Saula is not permitted to work full time in the U.S.
As she says, “I am allowed to exist, to be here and to smile.” Hopefully the event Friday night will allow the entire Saula family, and their growing network of friends in Las Vegas, to do the same.