Bereaved Parents and Caregivers

“If ever there is tomorrow when we’re not together…there is something you must always remember.  You are braver than you believe, stronger than you seem, and smarter than you think.  But the most important thing is, even if we’re apart…I’ll always be with you.”

Winnie the Pooh by A.A. Milne

Each day, we remember our community of families who miss their loved ones lost to Batten disease.  In 2013, there were 55 children known to BDSRA who passed away.  We are deeply saddened but not alone in our grief journey.  We remember with sadness but also recall the hope, smiles and courage.

BDSRA  services and support continue to be available and helpful to families after their loved one has passed.  We send an arrangement of flowers to families at the time of the loved one’s passing and provide the family with a copy of bereavement book that can serve as a source of strength and comfort.  Bereaved families can also stay in touch through the BDSRA Closed Facebook Group for Parents and Caregivers and at the Annual BDSRA Conference for families.  The conference concludes with a heartfelt tribute to lost loved ones with the Memorial Service and display of the Memorial Wall.


The Dougy Center – The National Center for Grieving Children and Families
The Dougy Center provides support in a safe place where children, teens, young adults, and their families grieving a death can share their experiences.  They provide support and training locally, nationally and internationally to individuals and organizations seeking to assist children in grief. Services are free of charge.


“A Time To Grieve – Meditations for Healing After The Death of a Loved One” by Carol Staudacher

A collection of truly comforting, down-to-earth thoughts and meditations — including the authentic voices of survivors — for anyone grieving the loss of a loved one.