Leading the worldwide fight to treat and cure
Tay-Sachs, Canavan, GM1 and Sandhoff diseases

Grief - It Starts with the Diagnosis

Tay-Sachs, Sandhoff, GM1, Canavan and related diseases

Grieving starts the day you receive the diagnosis. You grieve the loss of all your hopes and dreams for your child. As the disease progresses you grieve the loss of each milestone and cherish each and every smile, giggle and coo, never knowing which will be the last. But none of that prepares you for the day your child passes away.

Nothing will make the loss of your child OK. Understanding grief may make it less difficult. With time (lots and lots of time), you'll find that you have the strength to carry this profound loss and enjoy happy times again.

Supportive Newsletters (Bereaved)
Access 12 months of supportive newsletters to help you move through the first year after the death of a loved one.

document NTSAD Lending Library (31 KB)
A list of books available for loan from NTSAD on coping with grief for parents, grandparents, and siblings

Understanding Grief and Bereavement

A Bereaved Parent's Wish List
Complied by Diane Collins - The Compassionate Friends, Bay Area Chapter,     Houston

document What Do We Need During Grief? (26 KB)
By Judith Herr, MSW, Hilltop Hospice, Grand Junction, CO.

document Reflection on Grief: Journeys of Love, Loss and Remembering (27 KB)
Lifeline article by Elissa Al-Chokhachy, RN, BSN

pdf Grieving No Wrong Way to Do It! (558 KB)
Boston Globe Article

document A Pair of Shoes (27 KB)


pdf Elements of Healing (252 KB)
By Rev. Kenneth Czillinger

document Helping Yourself Heal When Your Child Dies (33 KB)
By Alan D. Wolfelt, PhD


document Remembering Wiz (31 KB)
Lifeline article by Marla Fine

document An Empty Place at the Table - Making the Holiday"Right" for You (26 KB)
Lifeline article by Kay Bergen, Bereavement Coordinator, Houston Hospice

document Ways to Remember, After Your Child is Gone (29 KB)
Lifeline article by Alison Lord

document Honoring Emily's Birthday (25 KB)
Lifeline article by Karla Jones

Dad's Perspective

pdf Emily's Legacy (1.77 MB)
Lifeline article by Ron Wells

pdf Baseball and Tay-Sachs (1.50 MB)
Lifeline article by Tim Lord

Sibling's Perspective

pdf Surviving Siblings (754 KB)
Lifeline article by Akari Yamada

pdf Coping Mechanisms for Grieving Siblings (442 KB)
Lifeline article

pdf My Cousin Nickolas (339 KB)
Lifeline articles by Ashley Louis Wittrock, Jeremy Wittrock and Brad Nickum

pdf My Grief Rights: 10 Healing Rights of Grieving Children (281 KB)
By Alan D. Wolfelt, PhD

pdf Signals for Attention from a Grieving Child (185 KB)
By William Worden, PhD

Sesame Street DVD

Sesame Street produced a thoughtful DVD about children dealing with grief. It focuses on children who have lost a parent but is still useful for siblings who have lost a sibling. Please contact our director of family services Kim at This email address is being protected from spambots. You need JavaScript enabled to view it. or 800.906.8723 for a free copy.

How I Feel: A Coloring Book for Grieving Children

For kids ages 3-8 to explore the many feelings grieving children often experience. Please contact our director of family services Kim at This email address is being protected from spambots. You need JavaScript enabled to view it. or 800.906.8723 for a free copy.

Online Bereavement Resources

SibShops are an opportunity for brothers and sisters of children with special health and developmental needs to obtain peer support and education within a recreational context. SibShops often runs the Sibling Workshop at the Annual Family Conference.

The Sibling Connection

This is an excellent site offering a greater understanding of the personal grief process and that of many others.

Kids Aid: 2 Kids, 4 Kids, By Kids: understanding, coping and moving on
KIDSAID is a safe place for kids to share and to help each other deal with grief about any of their losses. It's a place to share and deal with feelings, to show artwork and stories, to talk about pets, to meet with one's peers. There will even be some games and contests.

Counseling for Loss & Life Changes
This is a complete and user friendly site.

National Center for Grieving Children
This is a general grief site full of information and links, plus online support groups.

A Heartbreaking Choice
This website supports women who have ended a pregnancy due to poor prenatal diagnosis.