follow

Leading the Fight to treat and cure
Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

Parenting a Child with Life-Limiting Illness

A film for families

 

The trailer is also available on You Tube - Parenting a Child with Life-Limiting Illness 

Host a Screening Party

Increase the awareness of the family experience by hosting a screening of this film. Read more Host a Screening Party

For the Family - Order Your Copy

Complete the Parenting Film - Family Order Form or print Order Form and mail

Professionals

Order online below or print  pdf Professional - Film Order Form (84 KB) and mail

Professionals - Select Quantity

Film Content

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.

It is this intimate portrait of family experiences, emotions and needs that also make this video valuable as an education tool for providers who support these families, including pediatricians and palliative care doctors.The DVD arrives packaged in the Resource Guide. The DVD includes both the Family version and the slightly shorter Professional version. The Resource Guide features glossary of terms, commonly used special equipment as well as discussion questions for using the video in a professional development setting.

Families and professionals are encouraged to share the film with their communities. Check back in September for resources to help you host a screening.

NTSAD is deeply grateful to Genzyme, a Sanofi Company, for the generous Patient Advocacy Leadership Awards Innovation Grant to support this project.

 

 

Enter your email to receive NTSAD's Topic of the Week or quarterly news.


Login