Leading the Fight to treatand cure Tay-Sachs, 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 (.doc)A list of books available for loan from NTSAD on coping with grief for parents, grandparents, and siblings
A Bereaved Parent’s Wish List (.pdf)Complied by Diane Collins – The Compassionate Friends, Bay Area Chapter, HoustonWhat Do We Need During Grief? (.doc)By Judith Herr, MSW, Hilltop Hospice, Grand Junction, CO.Reflection on Grief: Journeys of Love, Loss and Remembering (.doc)Lifeline article by Elissa Al-Chokhachy, RN, BSN Grieving No Wrong Way to Do It! (.pdf)Boston Globe Article
A Pair of Shoes (.doc)anonymous
Elements of Healing (.pdf)By Rev. Kenneth CzillingerHelping Yourself Heal When Your Child Dies (.doc)By Alan D. Wolfelt, PhD
Remembering Wiz (.doc)Lifeline article by Marla FineAn Empty Place at the Table…Making the Holiday “Right” for You (.doc)Lifeline article by Kay Bergen, Bereavement Coordinator, Houston HospiceWays to Remember, After Your Child is GoneLifeline article by Alison LordHonoring Emily’s BirthdayLifeline article by Karla Jones
Emily’s LegacyLifeline article by Ron WellsBaseball and Tay-SachsLifeline article by Tim Lord
Surviving SiblingsLifeline article by Akari YamadaCoping Mechanisms for Grieving Siblings (.pdf)Lifeline articleMy Cousin Nickolas (.pdf)Lifeline articles by Ashley Louis Wittrock, Jeremy Wittrock and Brad NickumMy Grief Rights: 10 Healing Rights of Grieving Children (.pdf)By Alan D. Wolfelt, PhDSignals for Attention from a Grieving ChildBy William Worden, PhDSesame 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
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
or 800.906.8723 for a free copy.
SibShopswww.siblingsupport.org/sibshopsSibShops 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 Connectionwww.counselingstlouis.netThis 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 onwww.kidsaid.comKIDSAID 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 & Familieswww.grievingchild.org This is a warm user friendly bereavement website. It also lists resources available in each state. The Shiva Foundationwww.goodgrief.orgThis 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 Changeswww.counselingforloss.comThis is a complete and user friendly site. Grief Netwww.griefnet.orgThis is a general grief site full of information and links, plus 47 online support groups. A Heartbreaking Choicewww.aheartbreakingchoice.comThis website supports women who have ended a pregnancy due to poor prenatal diagnosis.
National Tay-Sachs & Allied Diseases Association2001 Beacon StreetSuite 204Boston, MA 02135
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