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. The parents featured are coping with the devastating diagnosis of infantile Tay-Sachs, juvenile Tay-Sachs and GM-1, but the issues they discuss are universal to any life-limiting illness. Their comments are deeply personal, unaffected, insightful, and courageous as they share the intimate story 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 are common throughout: the importance of connecting with other families and their certainty as parents of their ability to love and care for their children through the entirety of their lives.
Also available on YouTube – Parenting a Child with Life-Limiting Illness
Audience: Parent, Professional