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.
NTSAD Lending Library
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
A Pair of Shoes
By Rev. Kenneth Czillinger
document Helping Yourself Heal When Your Child Dies (33 KB)
By Alan D. Wolfelt, PhD
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
Ways to Remember, After Your Child is Gone
Lifeline article by Alison Lord
Honoring Emily's Birthday
Lifeline article by Karla Jones
Lifeline article by Ron Wells
Lifeline article by Tim Lord
Lifeline article by Akari Yamada
pdf Coping Mechanisms for Grieving Siblings (442 KB)
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
How I Feel: A Coloring Book for Grieving Children
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.