Abraham Lincoln may have had it. Olympic volleyball player Flo Hyman definitely did. In 1986, she died of it, as did Jonathan Larson playwright and composer of the musical “Rent” who passed away in 1996, three months before his blockbuster play opened on Broadway.
So when acclaimed Broadway dancer and choreographer Ann Reinking, whose teenage son, Christopher, has it, she approached Sag Harbor’s Brenda Siemer about making a film — Brenda, a long time friend, readily agreed.
“It” is Marfan’s Syndrome — a genetic disorder of the connective tissue that affects roughly one in 5,000 people. Individuals with Marfan’s often have distinctive features — they can be very tall with long limbs, fingers and toes. They are abnormally flexible in their joints and depending on the severity, can suffer a range of physical problems including scoliosis, indentation or protrusion of the chest bone and dislocated lenses.
Marfan’s, if left undiagnosed, can lead to early and sudden death through enlargement and rupture — or dissection — of the aorta. Marfan patients frequently undergo open heart surgery to repair aorta damage. But both Hyman, who died during a volleyball game at the age of 22, and Larson, 34, were undiagnosed, as are thousands who live unknowingly with the disease. All it takes to know for sure is an echocardiogram.
“They look at someone very young and healthy and don’t treat them for aortic dissection,” says Reinking. “Had he known he had a tissue disorder, Jonathan Larson may still be alive. It’s very important for people to know that and it’s not invasive to find out.”
“In Our Hands” is an hour long documentary on Marfan Syndrome co-directed and co-produced by Brenda Siemer and Emma Joan Morris. The film premieres next week at the Hamptons International Film Festival and it offers an explanation of the disorder through interviews with doctors and personal reflections from those who suffer with Marfan’s as they gather in California at a National Marfan Foundation conference.
“My son and Ann’s son were born within a week of each other,” says Siemer. “Christopher had long fingers. Ann thought he was going to be a piano player. But she was afraid of it. What I filmed was her at her first Marfan’s conference.”
During the conference, the Marfan’s children spent a day in the woods learning about trust by walking on wires strung in the trees as they relied on one another, literally, for support.
“It looked like Giacometti sculptures,” says Reinking, the film’s executive producer. “I thought, this is like moving sculpture, I think I can choreograph a dance like that. They need to know how beautiful they are.”
Siemer saw Reinking’s dance piece as the perfect way to draw attention to the unique beauty of the children in the film.
“If you’re presenting a scientific subject, my point of view is you have to embed it in art so people will want to see it,” says Siemer. “You have to create an artistic vision that talks about Marfan’s.”
For Reinking, the decision to speak publicly about Marfan’s was not easy — she didn’t go to a Marfan’s conference until her son was 17. But ultimately, it was something she felt she had to do.
“I was afraid at first – you’re worried about how your children are perceived,” she says. “I’m not a doctor. I’m a mother who happens to dance and do choreography. Is there a way I can truly help? I worked with Brenda on two other documentaries. She and Emma Morris I thought were perfect.”
“I felt I wasn’t being responsible by hiding,” adds Reinking. “I wanted to do it in a way that gave these kids dignity and didn’t go down this road as constant sorrow. They deserve more.”
When Siemer began researching Marfan’s for the film, she was amazed to find that the path lead right back to Sag Harbor and Priscilla Ciccariello, a resident who has been active in the National Marfan Foundation since its founding in the early 1980s.
Ciccariello has a special reason to be concerned with educating the public on the disorder. She is the mother of seven sons, three of whom were born with Marfan’s. Her son, Steve, died of an aortal dissection after taking part in a foot race in 1969 — a month before graduating from college. Five years later, her husband Charlie, also succumbed to the disorder and she also lost a grandson to Marfan’s. Ciccariello, her son John, who lives in East Hampton, and his teenage daughter, Danica — both of whom have Marfan’s — are all in the film. For John Ciccariello, coming to terms not only with having the same condition that took the life of his father and brother, but also deciding how best to protect his daughter’s health while still giving her the freedom to be an active and normal teenager, has been difficult. In the film he speaks frankly about his hopes, losses, and fears and invites viewers into his private life to show them how he has learned to cope with Marfan’s through his art.
“During the filming, I started to think of repercussions about what I was saying,” he admits. “I had to put personal things on the line for the sake of helping people.”
“I feel if I’ve really done something big for my family, my children and the people who have died before me,” he adds. “I’m beside myself.”
Priscilla Ciccariello is amazed at the strides that have been made since the late 1950s — before open heart surgery — when Marfan’s was a literal death sentence.
“There’s an amazing parallel between my life and Charlie’s life and the research of Marfan’s history,” she says. “I’ve seen the worst of Marfan’s and now, Danica is in a clinical trial leading to more advances.”
“In My Hands” will be screened at the UA East Hampton Theater on Thursday, October 8 at noon and Monday, October 12 at 8 p.m. as part of the Hamptons International Film Festival. It will be preceded by “Smiles: A Short Story of Roy Scheider” a seven minute film by Brenda Siemer about her husband and his battle with multiple myeloma, a cancer of the bone marrow.
For more information about the National Marfan Foundation visit www.marfan.org.
Top: Marfan’s Children during shooting of Ann Reinking’s choreographed dance piece.
John Ciccariello (left) with his daughter, Danica, mother, Priscilla, and filmmaker Brenda Siemer.
