NTSAD to premiere new film, "Parenting a Child with Life-Limiting Illness" in Cambridge, MA on June 27th

Dan Leonard | June 19, 2013

It is difficult to imagine there could be anything harder to hear – your child has a life limiting illness and there is no cure or treatment. Nothing can take those immediate fears away, but knowing that you are part of a community of people who understand what you are going through can help. On Thursday, June 27th at 5:30pm, the National Tay-Sachs and Allied Diseases (NTSAD) organization will host a screening at Genzyme Center in Cambridge, MA of their latest resource for parents who are looking for support as they cope with their child's life-limiting illness. If you are interested in attending the free screening, please RSVP to Ingrid@ntsad.org.

In addition to helping families, the video will also serve as an education tool for medical providers, including pediatricians and palliative care doctors.— Dan

Three years ago, NTSAD envisioned creating a video to support members of their community faced with just this challenge, to “…help newly diagnosed families understand the spectrum of care options, situate their own goals for their child and develop their philosophy of care.” In 2011 NTSAD was awarded a Genzyme Patient Advocacy Leadership (PAL) award for the project. What resulted was a video that went far beyond the original scope.

The video, “Parenting A Child With A Life-Limiting Illness: Caring, Coping, Surviving,” encompasses everything from managing the initial diagnosis to maintaining healthy relationships to understanding hospice and palliative medicine. According to Sue Kahn, Executive Director of NTSAD, “This film turned out to be so much deeper and more useful to our families than we could have imagined. A number of long-time NTSAD families told me that they wish they had this resource when their child was first diagnosed. Additionally, we see that it can offer so much insight to any family who has a child living with any type of life-limiting disease.”

The production was overseen by Kim Kubilus, Director of Family Services at NTSAD, and Blyth Lord an NTSAD Board member and parent of a Tay-Sachs child. Blyth was uniquely qualified to produce the video given her background in television production at a Boston public TV station. Blyth and her husband also appear in the video, sharing what they learned caring for their daughter who died from Tay-Sachs at the age of two in 2001. With her expertise in the NTSAD community, Kim assembled a project advisory team and identified a diverse cross-section of families to tell their stories in the video. It was a tremendous amount of work, taking over two-and-a-half years to develop and produce. There were many challenges along the way, including the unexpected loss of all of the interview footage which necessitated a re-shoot that added another year to the project timeline. 

What surprised the project team the most was just how open and frank the parents were in front of the camera, and how much they wanted to help others going through the same experience. One such family is Flory Roman and her husband Eduen, who appear in the video talking about their daughter Bella. Bella died of Tay-Sachs in 2012 at the age of seven, just a few months after their interview. Like other families featured in the film, Flory was motivated to participate in the video by her desire to help other families going through such a difficult experience.

In addition to helping families, the video will also serve as an education tool for medical providers, including pediatricians and palliative care doctors.— Dan

In addition to helping families, the video will also serve as an education tool for medical providers, including pediatricians and palliative care doctors. An accompanying guide includes discussion topics for using the video in a professional development setting. The video is now completed and a trailer can be viewed on the NTSAD YouTube Channel and can be ordered at www.ntsad.org. It is free for families and there is a small fee for professional organizations.

Though this year's PAL Awards program is now closed, please check the website for more information. Recipients of the 2013 program will be announced by September 30th.  Blyth’s advice to any organization considering applying for an award: “Find the sweet spot where your organization’s expertise meets a clear and present need. Make sure you’re passionate about the subject and be prepared to donate time and expertise to execute.”
 

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