Film premiered in April at the
NTSAD Annual Family Conference in San Diego
Parenting a Child with Life-Limiting Illness
Caring, Coping, Surviving
to lessen feelings of isolation and provide genuine hope
This film was produced by National Tay-Sachs & Allied Diseases Association (NTSAD) to lessen the feelings of isolation that newly diagnosed families experience and to give them genuine hope that they will survive as they care for their sick child. The parents featured are coping with the devastating diagnoses of infantile Tay-Sachs, juvenile Tay-Sachs and GM-1; however, the issues discussed are universal to any life-limiting illness. The parents' comments are deeply personal, unaffected, insightful, and courageous as they share the intimate stories of how they coped with their child's life-limiting diagnosis, tend their marriage, care for their other children, involve friends, engage palliative and hospice care, and make difficult care choices. Even as the perspectives are varied, two themes resonate throughout: the importance of connecting with other families and the parents' profound certainty of their ability to love and care for their child through the entirety of their child's life.
Through a generous grant from Genzyme--a Sanofi Company to support this project, NTSAD is delighted to offer the film and resource guide FREE to families coping with any life-limiting diagnosis. The film will also be available to medical professionals.