Caring for a child with Batten disease often means facing difficult decisions, sometimes in
moments of crisis, fear, or exhaustion. Families are asked to weigh treatments, interventions,
hospitalizations, and next steps while also trying to preserve some sense of normal family life. In
the middle of so much uncertainty, goals of care can provide an anchor.

Goals of care simply means identifying what matters most for your child and your family so that
medical decisions can be guided by those priorities. For some families, that may mean
prioritizing comfort. For others, it may mean pursuing treatments that offer more time. Often, it
means finding a balance between extending life, minimizing suffering, and protecting quality of
life.

A helpful place to begin is by asking:
What does a good day look like for my child?
What brings them comfort or joy?
What parts of family life feel most important to protect?
What level of medical intervention feels helpful, and what begins to feel too burdensome?

These questions help families make decisions rooted not only in medicine, but in their values
and lived reality. Goals of care conversations are not one-time discussions. They should
continue over time as your child’s condition changes and as your family gains new
understanding. A decision that felt right months ago may feel different after a hospitalization or
change in baseline. That does not mean anything was wrong before, only that caregiving
priorities evolve.

These conversations also help the medical team better support your family. When clinicians
understand your goals, they can offer options that align with what matters most.

Goals of care is not about giving up hope. It is about gaining clarity, clarity about your hopes,
your worries, and the kind of care that best fits your child and family. In the middle of medical
uncertainty, that clarity can make hard decisions feel a little less overwhelming. Certain types of
decisions should be documented to protect your child and family. A palliative care professional
or social worker can guide you in thinking about this. Finding support from trusted advisors on
the medical team, therapists or spiritual leaders can be very helpful.

Courageous Parents Network offers more detailed information and guidance on these topics,
including decision-making, goals of care and advance care planning. Visit
CourageousParentsNetwork.org or the section specific to medical complexity,
MedicalComplexity.org.

Courageous Parents Network Offers Digital Tools to Guide You, No Matter Where You are in
the Care Journey

Caring for a child with Batten disease can feel overwhelming, as you navigate complex medical
needs, changing abilities, and deep emotional challenges. Courageous Parents Network offers
resources for families facing serious childhood illness, with guidance for today and what lies
ahead, plus a Media Library, blog, and events designed to connect and support you. Wherever
you are in your journey, you are not alone.

Here’s how it can help:

Navigating Medical Complexity
Batten disease often involves frequent decisions about seizures, feeding, mobility, and care
coordination. This tool offers videos, guides, and practical resources organized into
phases—Orienting, Navigating, and Moving Forward—to help you better understand what to
expect and how to advocate for your child.

NeuroJourney
Designed for specifically for families of children with severe neurological conditions, including
Batten disease, this tool offers resources organized through four phases - Adapting to
Diagnosis, Building Strengths, Adjusting to Changes, and Navigating Decline – to help you to
locate where you are in the care journey. The tool explores the interconnected relationship of
the brain and body systems helping parents anticipate what medical complications may be part
of their child’s life and explore the emotions that often accompany changes in baseline.
NeuroJourney, explained in this video, is available in 5 languages and audio formats.

Coping with Loss
Created for bereaved families, Coping with Loss offers perspectives on loss and grief from
families and clinicians of the CPN network. This digital tool is also organized into
sections—Understanding Grief, Coping with Loss, and Maintaining Connection—with
complementary resources and perspectives from families and caregivers on topics such as
identity, caring for the siblings and continuing your bond with your child.

For Clinicians and Care Teams
If you’re working with a family, this portal can help you better understand the lived experience.
It includes parent voices and tools to support more compassionate, coordinated care.