Welcome to the section of BDSRA’s web site for families and caregivers. We’re glad you’re here! Our goal is to provide accurate, up-to-date information about many aspects of Batten disease including concerns you may have about coping with Batten disease and/or how your family members are coping. We have included helpful links to a range of community resources and informative sites, so that you can focus your attention on your loved one/s with Batten disease.
It’s common when you are told your child or family member has Batten disease to be overcome with strong emotions – fear, anxiety, sadness, and even despair. Parents often have many questions…
- How will I cope with having a child with this disease?
- Where can I get help?
- What about my unaffected child/children? How can I help them cope with our situation?
- What particular needs will my child have as the disease progresses?
For more than 25 years. BDSRA has provided help and hope for families living with Batten disease.
“When our son was first diagnosed, our family didn’t know anything about Batten disease – it’s so rare. When we searched online, we found BDSRA. The staff and connections with other Batten families that we’ve come to know through attending the annual conference have been priceless.” – Batten mom of daughter with Late Infantile Batten disease
“When you get the finally get the diagnosis of Batten disease, it’s a devastating message for any parent to hear. We wanted to know all that’s happening with research discoveries to find a cure. BDSRA not only helps educate families about current available clinical trials, they also dedicate part of their budget to fund Batten researchers throughout the world. We can’t thank them enough!” – Batten dad of son with Juvenile Batten disease
The entire Batten community — staff, other Batten parents, Batten siblings, board members, doctors, researchers, corporate sponsors, nurses, volunteers, paraprofessionals, special education teachers, clinicians and donors are all working towards the same goal in providing hope for a cure and help for the journey for you and your loved ones.
As you navigate BDSRA’s web site, you’ll find information about programs specific to BDSRA as well as information and links to government and community resources. These resources will help you to better understand your loved one’s needs and manage the day-to-day challenges of caring for someone with Batten disease.
This storehouse of information is ever changing and we welcome your feedback to help improve the information we provide to all Batten families.
Contact Tracy Kirby, Family Liaison and Administrative Lead at email@example.com with your comments, corrections, suggestions or concerns with regard to information on the web site and any changes you would recommend.
Parenting and Finding Emotional Support *
BDSRA is here to help in many ways. Parents and caregivers can call our toll-free BDSRA Helpline, 1-800-448-4570, to talk with a licensed social worker about a variety of concerns. We can connect you with resources and programs in your community including individual and family counseling services. We help parents navigate their school system so they can access a free and appropriate education for their child or teen with Batten disease. We also can connect you with other Batten families via email or by phone or as part of our Closed Facebook Group for Parents and Caregivers. To access this help or for more information, contact Tracy Kirby, BDSRA’s Family Liaison and Administrative Lead at firstname.lastname@example.org
Meet Other Batten Families
Learn about some of our families and their stories and how they were helped by BDSRA.
“Ask An Expert” Facebook Chat
Learn more about caring for your loved one with Batten disease!
BDSRA hosts a Closed Facebook group for parents and caregivers of children, teens and adults affected by Batten disease.
The BDSRA Parent & Caregiver Education “Ask An Expert” Facebook Chats are designed to disseminate information about a broad range of care issues in an informal and supportive atmosphere.
Functional Behavioral Assessment
Ask A Pediatric Neurologist
Financial Planning and Special Needs
Individual Education Plans and Classroom Strategies
Sleep Problems in Children Who Have Batten Disease
Managing Meltdowns and Tantrums
Coping with Grief and Loss during the Holiday Season
All Things Sibs
Gene Therapy Basics
BDSRA on Social Media and Email
Stay connected to the BDSRA community through our communications and social media outlets:
- Email blasts – join our e-list for regular announcements and updates!
- Closed Facebook Group for Parents & Primary Caregivers
- Open BDSRA Facebook Page for family, friends and supporters
- Annual Family Conference, held in July for more information
- Monthly e-newsletter “The Illuminator” to read past issues
- Follow us on Twitter at www.twitter.com/BDSRA
CaringBridge is a nonprofit committed to bringing friends and family together during any form of health journey. Start a site today for you or a loved one!
Center for Parent Information and Resources
This site provides a repository of resources and products related to children with disabilities.
Courageous Parents Network
The Courageous Parents Network supports parents and families of children living with serious illness with the skills, tools and virtual support they need to cope and adapt during their child’s illness journey. They also promote the value of pediatric palliative care which adds an extra layer of support for families.
Exceptional Parent Magazine
Exceptional Parent (EP), a specialized magazine now in its 42 year, provides practical advice, emotional support and up-to-date information for families of special needs children. Among EP’s multi-media offerings include their monthly magazine, Resource Guide, web site, accredited seminars and teleconferences and the World Congress on Disabilities international conference.
Global Genes Parenting A Child with Rare Disease
This organization is one of the leading rare disease advocacy organizations, with global reach to the worldwide rare community of patients, caregivers, advocates and clinical partners. Their site features a variety of toolkits that cover a range of topics such as pediatric palliative care, parenting a child with a life-limiting illness, genetic testing, and legislative advocacy.
Mommies of Miracles
Mommies of Miracles is the worlds largest virtual support group for mothers of children who have medical complexities, life-limiting conditions, or developmental disabilities.
National Organization of Rare Diseases (NORD)
The National Organization for Rare Disorders (NORD) is a non-profit national organization that is dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Their site includes a Patient Information Center, News Section about Clinical Trials for rare diseases and a State-By-State Insurance Guide.
Partnership for Families
Padres con Padres
This resource guide includes an informative section about medical terminology and covers subjects such as “Stress and Your Marriage or Relationship” and “What Do I Tell My Child”. Also provides practical information about funeral planning and coping with loss and grief.
“A Cup Of Comfort for Parents of Children With Special Needs: Stories That Celebrate Our Differences In Our Extraordinary Kids” by Colleen Sell
A diagnosis of a child s special need can be extremely difficult for parents. However, every day, these children accomplish small victories and make great strides that improve their own lives and brighten their parents’ days. This collection brings to life fifty stories of parents who have struggled with a child s diagnosis only to embrace the differences that make their children that much more special and even more loved.
“The Special Needs Parent Handbook: Critical Strategies and Practical Advice to Help You Survive and Thrive” by Jonathan Singer
This book is a compilation of the many lessons learned by parents who have had a child with special needs. It’s especially helpful in navigating various systems – healthcare, financial and educational – and helps you to advocate more effectively for your child.
“The Still Point of the Turning World” by Emily Rapp
What does it mean to be a success? To be a good parent? To live a meaningful life? Emily Rapp thought she knew the answers when she was pregnant with her first child. But everything changed when nine-month-old Ronan was diagnosed with Tay-Sachs disease, a rare and always-fatal degenerative disorder. He was not expected to live beyond the age of three. Rapp and her husband were forced to re-evaluate everything they thought they knew about parenting and to learn to parent without a future.Even before the book’s publication, Rapp set the Internet ablaze with her New York Times op-ed piece about parenting a terminally ill child. An immediate bestseller, The Still Point of the Turning World is Rapp’s memorial to her lost son and an inspiring and exquisitely moving reminder to love and live in the moment.
Parents As Advocates *
Federation for Children with Special Needs
This organization provides a wealth of information, support and assistance to parents of children with disabilities, their professional caregivers and partners, and their communities. Programs include a Special Education Parent Center, a Family Support Center, a Health Advocacy Center, a Family and Community Engagement Center and a Parent-Professional Leadership Center.
National Association of Councils on Developmental Disabilities & State Councils
The National Association of Councils on Developmental Disabilities (NACDD) is a national membership organization representing the 56 State and Territorial Councils on Developmental Disabilities. NACDD is a non-profit organization that works to develop and sustain inclusive communities and self-directed services and support for individuals with developmental disabilities.
National Disability Rights Network (NDRN)
The National Directory of State Protection and Advocacy Agencies for Persons with Developmental Disabilities and Mental Illness
NDRN is a non-profit organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP). There is a P&A and CAP agency in every state and U.S. territory. This network is the largest provider of legally-based advocacy services to persons with disabilities in the country.
Wrightslaw is a leading comprehensive website about special education law and advocacy, with a myriad of articles, cases, and resources (some free of charge and some for purchase) about various topics related to special education for children and teens with disabilities.
Parents and Family Members as Caregivers *
The Caregiver Action Network (CAN) aka the Rare Caregivers Network
The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
Caregiver Resource Network
Shared caregiver stories, respite care information, wellness for the caregiver and other helpful links for caregivers
Children’s Hospice and Palliative Care Coalition
“Caring for Children Who Have Severe Neurological Impairment – A Life With Grace” by Julie M. Hauer, M.D. Johns Hopkins Press Health Book.
This comprehensive guide provides detailed descriptions of caring for a child with severe healthcare challenges, including pain management, sleep difficulties, feeding concerns and respiratory problems. Tables and key points are easily accessible for quick reference. The author also provides case studies and examples so the reader can learn how different families approach decision making.
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.
“On Grief and Grieving – Finding the Meaning of Grief Through The Five Stages of Loss” by Elisabeth Kübler-Ross and David Kessler
Elizabeth Kübler-Ross wrote the book on death and grieving. Her seminal first book, On Death & Dying, set the standard for counseling about mortality and mourning. Counselors discovered that the five stages of dying that she identified (denial, anger, bargaining, depression, and acceptance) also applied to other difficult and catastrophic life crises. In her final book, completed before she died in 2004, Kübler-Ross and coauthor David Kessler revisit the five stages to create a deeply emphatic and accessible guide for those in grief. In this powerful book of guidance, Kübler-Ross utilizes practical wisdom and spiritual insights garnered from her decades of experience as a psychiatrist, humanitarian, and grief counselor.
“The Grief Recovery Handbook” by John W. James and Russell Friedman
Incomplete recovery from grief can have a lifelong negative effect on the capacity for happiness. Drawing from their own histories as well as from others’, the authors illustrate how it is possible to recover from grief and regain energy and spontaneity. Based on a proven program, The Grief Recovery Handbook offers grievers the specific actions needed to move beyond loss. New material in this edition includes guidance for dealing with:
• Loss of faith
• Loss of career and financial issues
• Loss of health
• Growing up in an alcoholic or dysfunctional home
“The Needs of the Dying” by David Kessler
In gentle, compassionate language, The Needs of the Dying helps us through the last chapter of our lives. Author David Kessler has identified key areas of concern: the need to be treated as a living human being, the need for hope, the need to express emotions, the need to participate in care, the need for honesty, the need for spirituality, and the need to be free of physical pain. Examining the physical and emotional experiences of life-challenging illnesses, Kessler provides a vocabulary for family members and for the dying that allows them to communicate with doctors, with hospital staff, and with one another, and—at a time when the right words are exceedingly difficult to find—he helps readers find a way to say good-bye. Using comforting and touching stories, he provides information to help us meet the needs of a loved one at this important time in our lives.
“The Worst Loss – How Families Heal From the Death of a Child” by Barbara D. Rosof
The death of a child is like no other loss. The Worst Loss will help families who have experienced this to know what they are facing, understand what they are feeling, and appreciate their own needs and timetables.
“When Children Grieve – For Adults To Help Children Deal with Death, Divorce, Pet Loss, Moving and Other Losses” by John W. James and Russell Friedman
To watch a child grieve and not know what to do is a profoundly difficult experience for parents, teachers, and caregivers. Yet, there are guidelines for helping children develop a lifelong, healthy response to loss.
In When Children Grieve, the authors offer a cutting-edge volume to free children from the false idea of “not feeling bad” and to empower them with positive, effective methods of dealing with loss.
There are many life experiences that can produce feelings of grief in a child, from the death of a relative or a divorce in the family to more everyday experiences such as moving to a new neighborhood or losing a prized possession. No matter the reason or degree of severity, if a child you love is grieving, the guidelines examined in this thoughtful book can make a difference.