Support for Batten Siblings

Since the founding of BDSRA in 1987 by parents of children with Batten disease, providing programs, services and support to families has been a central focus of the mission of the organization.  Currently, BDSRA is the only family support organization in North America dedicated to serving newly diagnosed families, families coping with caring for a loved one and those who have lost a child to Batten disease.

Sibs Program at the BDSRA Annual Family Conference

Siblings of all ages can connect with others like themselves each year at the BDSRA Annual Family Conference.  Sibs enjoy planned recreational and social activities throughout the conference and make lasting friendships.  Sibs ages 6 years old and older can take part in day trips to local attractions with their peers.  The younger sibs, ages 5 years old and under can join in the fun activities in the Teddy Bear Club, a special on-site daycare, so that parents can attend the sessions without childcare worries.  Both the outings and Teddy Bear Club are supervised by adult volunteers.  A highlight of the conference weekend is the Sibs Dance Party on Saturday evening, which is open to all conference attendees.  Check out conference details here:  BDSRA Annual Family Conference

Parenting a Child or Teen Who is Grieving

These links and resources serve as a starting point for parents and caregivers to learn more about the way children and teens cope with loss and grief.  We sometimes recommend that families get help from a professional counselor or therapist familiar with grief issues.  If you or someone you love would like to find a helping professional to cope with grief and loss issues in your community, contact Margie Frazier, Ph.D., LISW-S, BDSRA Executive Director at 614-973-6011 or


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.


Magination Press

“A Happy Hat” by Cecil Kim

A Happy Hat is a sweet and upbeat tale of resilience, optimism, and hope. The life story of a hat — a very happy hat — and its various owners illustrates how dealing with disappointments and stressful situations is crucial to one’s well-being.

“Forever Special Friends” by Susan L. Greig

The story of a young girl with Batten Disease (NCL) as told through the eyes of her eight year old best friend. A book written and designed for both children and adults alike that helps to explain the prognosis and disease process.  Simple explanations and information about the disease in its earliest stages help families and loved ones know what to expect as the progression occurs.  Forever Special friends is an excellent resource to help siblings cope with changes in their brother or sisters behavior and it has helped both children and adults come to the acceptance that Batten Disease is a terminal disease. During bereavement and beyond this book provides comfort and help to acknowledge the grief that comes from losing a child.

“Goodbye Brecken” by David Lupton

Isabelle and her dog Brecken were always together, playing and snuggling. They were even born on the same day! When Brecken dies, Isabelle feels angry, sad, and lonely. Isabelle dreams she goes on a journey through the woods to find him. When she wakes, she is able to accept Brecken’s death and say goodbye. 

“Healing Your Grieving Heart Journal for Teens” by Alan D. Wolfelt, Ph.D.

Teenagers often don’t want to talk to adults—or even to their friends—about their struggles. But given the opportunity, many will choose the more private option of writing. Many grieving teens find that journaling helps them sort through their confusing thoughts and feelings.

Yet few journals created just for teens exist and even fewer address the unique needs of the grieving teen. In the Introduction, this unique journal—written by Dr. Wolfelt and his 14-year-old daughter, Megan—affirms the grieving teen’s thoughts and feelings and offers gentle, healing guidance. The six central needs of mourning are explained, as are common grief responses. Throughout, the authors provide simple, open-ended questions for the grieving teen to explore.

“Help Me Say Goodbye:  Activities for Helping Kids Cope When a Special Person Dies” by Janis Silverman

Help Me Say Goodbye An art therapy and activity book for children coping with death. Sensitive exercises address all the questions children may have during this emotional and troubling crisis. Children are encouraged to express in pictures what they are often incapable of expressing in words.

“How Do You Doodle?  Drawing My Feelings and Emotions” by Elise Gravel

How Do You Doodle? is a drawing book for kids to help them get in touch with and learn to express their emotions. The book is divided up into different fun doodle activities such as name your feelings, what do you feel when, and how does it feel when to help readers start thinking about what they experience when they are feeling an emotion. How do You Doodle? can be used alone, or in association with a therapist or parent to help kids better realize and understand their emotional responses to situations, and to help promote better emotional health. A “Note to Parents” is included.

“Part of Me Died Too:  Stories of Creative Survival Among Bereaved Children and Teenagers” by Virginia Lynn Fry.

A moving and eloquent chronicle of eleven children, ranging from toddlers to teenagers, who have lost family or friends shows how drawing, music, and other rituals can help the grieving process, offering creative strategies for dealing with loss.

“Sadako and the Thousand Paper Cranes” by Eleanor Coerr

The star of her school’s running team, Sadako is lively and athletic…until the dizzy spells start. Then she must face the hardest race of her life—the race against time. Based on a true story, Sadako and the Thousand Paper Cranes celebrates the courage that makes one young woman a heroine in Japan. 

“The Goodbye Boat” by Mary Joslin

Saying goodbye to someone you love is always hard. Saying goodbye when someone you love dies is perhaps the hardest thing of all.

Joslin’s simple, thoughtful text and Little’s evocative illustrations explore the pain and grief of saying goodbye and open the door to discussion for readers of any age. The Goodbye Boat provides a message of hope that sadness will ease and comforts with the reassurance that death is not the end.

“35 Ways to Help a Grieving Child” by the Dougy Center Staff

If you know a child or teen who has experienced a death, this guidebook presents you with simple and practical suggestions for how to support him or her. Learn what behaviors and reactions to expect from children at different ages, ways to create safe outlets for children to express their thoughts and feelings and how to be supportive during special events such as the memorial service, anniversaries and holidays. 

“Visiting Feelings” by Lauren Rubenstein, JD, PsyD

Visiting Feelings encourages children to treat their feelings like guests — welcome them in, get to know them, and perhaps learn why they are visiting. Through this purposeful and mindful exploration, Visiting Feelings harnesses a young child’s innate capacity to fully experience the present moment and invites children to sense, explore, and befriend all of their feelings with acceptance and equanimity. A Note to Parents provides more information about emotional awareness and mindfulness, plus practical advice and activities for introducing mindfulness into daily family routine.

“Where Are You?  A Child’s Book About Loss” by Laura Olivieri

Where Are You: A Child’s Book About Loss is a kind and supportive text with beautiful illustrations designed to help children of all ages cope with the loss of a loved one. It is created with love and care so that even the youngest readers will find comfort during this stressful and difficult time.