Categorized | Arts

In My Hands: Film tells the stories of Marfan Syndrome

Posted on 01 October 2009

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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.”

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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.


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16 Responses to “In My Hands: Film tells the stories of Marfan Syndrome”

  1. jullya mcveigh says:

    How can I see the film? My three year old daughter Rachel was diagnosed just before her 3rd birthday in March. My husband is being tested and his ECG showed a particularly thining aorta. I need to know more and would love to view the film.

  2. Thanks to the Sag Harbor Express for this wonderful article highlighting “In My Hands”. We at the National Marfan Foundation are thrilled at the attention this moving film is bringing to an often misunderstood condition.

    I would like to let your readers know that the National Marfan Foundation is available to answer any questions about diagnosis or management of the disorder. Call 800-8-MARFAN, or email to info@marfan.org.

    Tickets are still available for the film at the Hamptons International Film Festival website at http://hamptonsfilmfest.org, and we are hoping that the film will find wider broadcast or distribution opportunities as a result of this exposure.

    Thank you!
    Jonathan Martin, MS
    Director of Education
    National Marfan Foundation

  3. Sherry Heldt says:

    Thank you for the very informative article, I will share this with all my family and friends. I too lost a son to Marfan syndrome and know the pain of this loss and not knowing anything about it until Shawn’s Sudden Death. Awareness is so important if someone can see themselves in the awareness of Marfans perhaps their lives would be saved and a parent spared from living without them. Thanks for making more awareness known about Marfans by telling the story of Marfans.

    Hugs, Sherry Heldt

  4. Janet Bennettttt says:

    For addditional information you can go to the Marfan Web site at http://www.marfan.org
    Both my son (16) and I have it. I was diagnosed at 12 when no one really hear of it. I am thankful advances have been made. In May I underwent aortic repair and today (Oct) I am walking at least miles a day and feeling great!

  5. Monica Buescher says:

    I would like to know how to see this film. I have a 11 yr. old son who has Marfan and would like to educate myself in any way possible.

  6. Tee says:

    I was told 3 days ago from a local Pri-Med doctor that my 13 year old daughter has Marfans, When I took her to the doctor for a sore arm. Now I have been reading up on Marfan since 3 days ago, this is something I have never even heard of, I would like anyone who is reading this to e-mail me any and all infor they can that I may not have read,EVen though I have been reading different sites for 3 days now, I am scared to death for my daughter, I really need some positive stories to go on if there are any out there.
    shatima2004@yahoo.com
    Thanks and Gld Bless you all

    Tee

  7. Tara & Madison says:

    I am also very interested in this movie! Our daughter Madison (6yrs old)was diagnosed with Marfan Syndrome when she was a year in a half. We are now in Colorado where the right doctors are doing the right things for her!
    Tee,
    I can give you many numbers as well as resources for you and your family! Madison just recieved bad news about her scoliosis and we are very worried also.. However it is all in God’s hands now and we will let him decide what is next!
    mcguire.tara@yahoo.com
    God Bless and have a great day!

  8. Katelyn Gensel says:

    i think i may have this syndrome i am 15 and my wingspan is 6ft. 2 and i am only 5 ft. 8 what can i do to know if i have it or not. what are some of the symptons?

  9. Julie Atteberry says:

    My son had an aortic dissection in 2007 he also had a collapsed lung in 2005. He has a mechanical valve. When he was around 12 our doctor suspected Marfans Syndrome, but a pediatric cardiologist did tests on my sons heart to see if he had hyper-mobile valves in his heart and he said everything was fine. So of course we dismissed the possibility of Marfans at that time. When he had the collapsed lung, the doctor said a lot of tall and lean people have collapsed lungs. Another case of misdiagnosis. My son is very hyper mobile within his joints, he can bend his thumbs in half very easily. As a young boy his knees would jump out of place just walking from the bus stop. I wish I would have taken the doctor’s concern about Marfans more seriously but when the cardiologist said his heart had no hyper mobile valves, we all thought everything was just a young boy growing very fast. I dont know which side of the family has the possibility of more incidences of Marfans but I wish I could help my brothers and sister in case it is my side. I have warned them of the possibility and to look for the symptoms Jonathan has had, so I hope I made them aware of the possibility. I notice several physical symptoms in my niece’s and nephews on my side of the family, but I pray they do not succumb to this terrible disorder. My son just had his descending aorta replaced from his heart to the middle of his stomach (6-23-10) He is still recuperating from this extensive surgery. He had a great surgeon at Emory University Hospital in Atlanta, Ga. But he is having some depression issues, because he is trying to get SS Disability, or at least Medicaid but he has been turned down for the second time. I dont know what he will do with all the huge medical bills. He has been unemployed for 2 years, and is trying to do the best he can with all that has happened.

  10. Marilyn says:

    My 24 year old daughter suffered an aortic dissection on 11/29/09. We loved and cared for her until her death on 2/25/10.
    She had never been diagnosed with Marfan’s although we were to learn that she had many of the classic Marfan features.
    During her too short life she played goalie on her high school water polo team, swam in the ocean most days of the year, and during and after college went on to travel the world, bungee jumping, hang-gliding and parachute jumping. She had a full, wonderful life.
    Would it have been the same with a diagnosis? We are not sure.
    Our hearts are broken.

  11. Normand Laperle says:

    Hi,

    How can we see the film ?

    Thank you,
    Quebec (Quebec) Canada

  12. Cora Hendricks says:

    To Ann Reinking: I saw the clip by Diane Sawyer about teaching your son and friends to dance. I have a special needs daughter…not with the diagnosis your son has but with another illness that limits her greatly. She is too high functioning to fit in programs for the mentally disabled but not high enough to be part of regular programs. She wants so much to dance. Do you know of any programs or people who would take on special needs people to give them the joy of dance in the way you have for your son? Just trying to find leads of some kind. Thanks. We’re currently living southeast of Phoenix, AZ.

  13. To see the film, scroll down this page to below the video box, you will see DVD in bold letters. Just below it gives instructions on how to obtain the video IF YOU HAVE

  14. Darnit somehow I hit send too soon. As I was saying: IF YOU HAVE AN IMMEDIATE FAMILY MEMBER in your home with Marfans, you can request a copy for $25 plus shipping.
    http://www.marfan.org/marfan/4004/In-My-Hands-Documentary
    Just follow the link on the above page.
    If you do not qualify for the copy from NMF, you can order it here:
    http://www.filmakers.com/index.php?a=filmDetail&filmID=1629

    Please contact your local Public Television Station and request that they air this film so that it can reach as large an audience as possible.

  15. Aurellia Pratt says:

    Hi Everyone,

    My daughter was diagnosed with Marfans Syndrome at the age of 1. She is now 10 and is being treated by some of the best doctors that are in Arizona. Now that she is getting older she is being teased in school for her height and indented chest. I am so worried about her everyday she complains that her body aches and her back hurts from having a curved spine. I am seeking a support group that I can get her into with other people with Marfans so she knows that she is not alone. Her father passed away from a ruptured aorta when I was only 7months pregnant with her, He was never treated for his Marfans but was diagnosed after death. if there is anyone out there that has any information please let me know. my email is acpratt@yahoo.com

    Thanks

  16. Tiffany Long says:

    I clicked on the link but didn’t get anything. :( I have Marfan syndrome and so do at least two of my children. The youngest has just been tested and we are waiting for the blood work to come back. My mother was one one of ten children and 7 of them had Marfan Syndrome, so it runs though my family like crazy. My daughter has aortic dilation and my son doesn’t, but he gets mocked incessantly about how skinny he is. He weighs himself everyday and it’s a bit heart-wrenching for me. I would love to figure out how to get a hold of this movie to let them know they are not alone. I’ve looked around for it for about an hour and can’t find it. Any help would be excellent :) tiffany@tiffany-long.com


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