Monday night is usually a “dark night” in the theater world — a time of rest and renewal. But this Monday, June 6, is “Breathless on Broadway” night, and musical theater stars will be out in force in New York City, singing to remember a teenager who lost her life to pulmonary hypertension (PH) and to raise money that others similarly ill might have a chance for a brighter future.
“Breathless on Broadway” brings the musical theater world to Sardi’s restaurant, where attendees are treated to intimate performances of current Broadway hits and one-of-a-kind previews of future Broadway shows. All proceeds from the evening, which includes a silent auction, go to benefit phaware global, a nonprofit PH advocacy and education group, and its research efforts.
The benefit is also, importantly, a commemoration of Chloë Rand, a “PH warrior” who lost her life to the disease shortly before her 14th birthday, and who — despite a daily struggle to breathe — looked upon music as communication at its best.
“One of the blessings of our life,” Marie Mascia-Rand, Chloë’s mother and a phaware co-founder, told Pulmonary Hypertension News in an interview, “was that Chloë learned well through music. She understood things through singing to her better than through speaking to her. … My mom was a trained opera singer, so we’re a musical family” whose members took to speaking through song to their eldest child and sister.
“Music was always magical for Chloë,” said Liv Rand, 20, a student at the University of the Arts in Philadelphia, earning dual degrees in music and teaching. “It became part of our home, our life.”
A Family’s Inspiration
“Breathless” was a natural extension of those private musical moments, and of the Rand family’s interest in helping others. Zach Rand, now 18, began his professional acting career on Broadway as Gavroche in Les Misérables in 2007, just nine months after his sister’s death. He quickly became known for reaching out, helping to found Broadway Kids Care, and later taking part in a number of Broadway Cares acts of community service. But his sister, and the deadly disease that claimed her, were never far from his thoughts.
“She’s the reason I am who I am, and why I ended up on Broadway,” Zach, who will graduate from Princeton High School on June 20 before starting university at The New School, said in the interview. “She really was a warrior. It’s not easy to live with PH. It’s difficult to breathe — something that comes naturally to everyone else, something that’s in our DNA” is a struggle for people with PH.
“Chloë never let that affect her; she lived every day to the fullest,” Zach said. “To see someone struggling so much, yet to perpetually have a smile on her face and want to make other people happy and bring joy to everyone’s life. … It’s our job as family to adopt that lifestyle and to honor it and her.”
The evening at Sardi’s, an established Manhattan theater-district restaurant, will include performances by Zach and his sister Liv, and such musical theater stars as Giuseppe Bausillo (Cats, Billy Elliot, Aladdin), Max von Essen (American in Paris, Evita, Jesus Christ Superstar), Michael Lanning (Bonnie & Clyde, Civil War), and Zachary Sayle (Zach’s best friend and a star of Newsies national tour). The two friends will sing together, and Liv will perform with her close friend, Maia Katz.
Dozens of songs will be performed, including a number from an immersive theater production called The Bad Years, with the show’s composer at the piano.
Joining Zach in co-hosting the event is Jeffrey Hayzlett, the chairman and co-founder of the C-Suite Network, an educational and networking organization for business executives. Hayzlett, said Marie, is also a “tireless supporter” and “true friend” of the family and its efforts to improve life for people with PH.
A red carpet walk and cocktails open the evening at 5:30 p.m., with dinner and performances starting at 7 p.m., and a silent auction will include a pair of tickets to the sold-out Tony award-winning musical Hamilton. Individual benefit tickets, priced at $150, are available through the “Breathless on Broadway” website. (More information is also available on the event’s Facebook page.)
“Breathless” raised $40,000 in its first year, and the family is hoping to bring in at least as much this year. But, “more important than the money is raising awareness, getting people to come who may not know anyone with PH, may not really understand this disease,” Marie said. “They will when they leave — they’ll be knowledgeable, they’ll be supporters. We want to build a network of aware people, concerned people. People are good, they want to be of help, they want to help others. They just need to know how.”
One of those “hows” began with a little girl who refused to lay down and die as expected, and a clinical trial that made a first PH treatment possible.
The ‘PH Warrior’ Who Defied All Odds
Chloë Rand was born in 1992 with a defective heart, and underwent a first surgery to rebuild her aorta at the age of 8 days. A second aorta surgery was planned when she was 8 months old, but doctors found her pulmonary hypertension during pre-operative testing, and declined to continue. They “essentially sent her home to die,” said her mother.
Her family was understandably outraged, and a search for an alternative soon brought the Rands to Dr. Robyn Barst, a pediatric cardiologist at New York-Presbyterian Hospital with an interest in pulmonary hypertension. Barst, who would become Chloë’s lifelong physician, enrolled the 18-month-old in a clinical trial testing a new drug, epoprostenol sodium, as a potential PH treatment. The drug, and the trial, were a success, and epoprostenol, under the brand name Flolan, became the first medication approved by the U.S. Food and Drug Administration (FDA) to treat PH in 1996.
But it was an uphill fight.
“Robyn said to me, ‘Let’s use this medication. It might be able to lower her pulmonary pressures enough to make surgery possible,'” Marie said. “She had 99 percent chance of dying, but we said, ‘Go ahead.’ It was unknown territory, and people were taking a huge chance — the doctors were taking a huge chance; we were taking a huge chance.”
The drug worked as hoped, and sufficiently lowered artery pressures to allow Barst and her surgical team to repair the hole in Chloë’s heart. Weaning her from the post-surgical machines to assist with breathing, however, was another challenge. The physicians feared doing so, and told the family they could not without risking her life. But Chloë soon let everyone know that she had other plans.
“We call Chloë a warrior because she was out there fighting before anything was done [to treat] this disease,” Marie said. “Her mind, body, her soul was working side-by-side with Robyn Barst to come through all this.” And the baby once sent home to quietly die would “live 12 and a half years more.”
That courage was “what led us to say, we’ve got to carry this on,” Marie said, “do what she began to do in best way we can for others with this disease.”
And it led her brother to decide that once he had “a big enough voice” to be influential, he would use that talent to bring others to join the PH fight, Chloë-style.
Performers at “Breathless on Broadway” are not only talented artists but family friends — including von Essen, a Tony Award nominee who starred with Zach in the 2007 revival of Les Misérables.
Getting them to commit to the June 6 event was easy, because “they all know how much Chloë means to us,” Zach said. “How great an impact she had and has on our lives.”
“The cool thing about Broadway,” added Liv, “is that it’s small and tightly knit, but it’s always evolving.”