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

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

Understanding Grief

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

What Do We Need During Grief?
By Judith Herr, MSW, Hilltop Hospice, Grand Junction, CO.

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

Grieving No Wrong Way to Do It!
Boston Globe Article

A Pair of Shoes


Elements of Healing
By Rev. Kenneth Czillinger

Helping Yourself Heal When Your Child Dies
By Alan D. Wolfelt, PhD


Remembering Wiz
Lifeline article by Marla Fine

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

Ways to Remember, After Your Child is Gone
Lifeline article by Alison Lord

Honoring Emily's Birthday
Lifeline article by Karla Jones

Dad's Perspective

Emily's Legacy
Lifeline article by Ron Wells

Baseball and Tay-Sachs
Lifeline article by Tim Lord

Sibling's Perspective

Surviving Siblings
Lifeline article by Akari Yamada

Coping Mechanisms for Grieving Siblings
Lifeline article

My Cousin Nickolas
Lifeline articles by Ashley Louis Wittrock, Jeremy Wittrock and Brad Nickum

My Grief Rights: 10 Healing Rights of Grieving Children
By Alan D. Wolfelt, PhD

Signals for Attention from a Grieving Child
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. KIDSAID is owned and run by GriefNet.

The Dougy Center: The National Center of Grieving Children & Families
This is a warm user friendly bereavement website. It also lists resources available in each state.

The Shiva Foundation
This is an informative and thoughtful site run by Deborah Morris Coryell who has worked in the health field for more than 25 years and is co-founder and executive director of The Shiva Foundation, an organization dedicated to education and support for those dealing with loss and death. Deborah personally replies to all of the posts in the forum. Be sure to check out the many grief links.

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

Grief Net
This is a general grief site full of information and links, plus 47 online support groups.

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


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