Exhaustion and sleep deprivation
Seizure monitoring, night waking, high-needs care, chronic sleep deprivation has serious effects on physical and mental health, and on the capacity to care.
First
You are allowed to find this hard.
There is sometimes an unspoken expectation that carers should cope, that love for a child somehow replaces the need for rest, support, or acknowledgement of difficulty. It does not.
Caring for a child with a complex neurological condition involves grief, grief for the life you had imagined, for typical milestones that pass differently or not at all, and sometimes for periods of your child's health that are particularly frightening. That grief is real, and it deserves acknowledgement.
It also involves extraordinary resilience, fierce advocacy, deep knowledge of your child, and a capacity to hold complexity that few people outside of your situation fully understand. Both things are true at once. You do not have to be one or the other.
What we hear
Common experiences among DEE carers.
Anxiety and hypervigilance
When your child has seizures, background awareness of risk becomes constant. Many carers describe a state of chronic alertness that makes it difficult to relax.
Grief and loss
Grief is not only at diagnosis. It resurfaces at key moments, a missed milestone, a treatment that does not work as hoped. Allowing space for it is important for long-term wellbeing.
Social isolation
Friendships drift. Couple relationships are strained. The isolation of being one of very few who understand what your family is living can be profound.
Financial stress
The impact through lost income, therapy costs, equipment, and travel is significant for many families, and is not always acknowledged.
Diagnostic uncertainty
For families still in the diagnostic process, or living with a variant of uncertain significance, the absence of a clear answer adds its own burden.
Practical support
What you can access right now.
Respite care
Respite is one of the most valuable supports available to carers, and one of the most underused. Many carers feel guilty accessing it, or do not know what is available.
- NDIS, respite (including Short Term Accommodation) can be included in your child's plan as Core Support funding. If not already in your plan, raise it at the next review.
- Carer Gateway, the Australian Government's carer support service provides emergency respite, planning assistance, and coaching. carergateway.gov.au or call 1800 422 737.
- State-based disability and respite services, available in some states and territories outside the NDIS framework.
Financial support
Centrelink offers payments specifically for carers:
- Carer Payment, income-tested payment for people providing constant care
- Carer Allowance, supplementary payment for carers providing daily care; can be received in addition to Carer Payment or by working carers
- Carer Supplement, annual payment made automatically to Carer Payment and Carer Allowance recipients
Visit servicesaustralia.gov.au or call Services Australia on 132 717.
Carer Gateway counselling and coaching
Through Carer Gateway, carers can access free counselling (individual and group), peer support, online skills courses, and carer coaching, nationally, without NDIS eligibility.
Mental health
Looking after your mental health.
Carer mental health is a genuine health concern, not a personal failing. Research consistently shows elevated rates of anxiety, depression, and post-traumatic stress among carers of children with complex medical conditions. This is a rational response to sustained, high-stakes pressure.
If anxiety, depression, or emotional exhaustion is affecting your daily functioning, please consider speaking with your GP as a first step. Your GP can:
- Provide a mental health care plan (Medicare-rebated psychologist sessions)
- Discuss medication if relevant
- Refer to specialist mental health services
Accessing support for your own mental health is not a distraction from caring for your child, it is part of it.
Peer connection
You don't have to explain yourself.
One of the most consistent things families in the SCN2A community say is that connection with other families who genuinely understand is invaluable, in a way that even the most supportive friends and family cannot quite replicate.
SCN2A Australia links families with others in similar situations, similar ages, similar challenges, peer connections made through our network, not through a referral pathway. We also coordinate regular virtual meetups and an annual family event where families can connect in person.
There is something profoundly relieving about a conversation where you do not have to explain what SCN2A is, or why your child's seizures are particularly dangerous, or what a bad night looks like. That relief is worth seeking out.
Angel Aid
A wellbeing programme co-designed for rare-disease carers.
SCN2A Australia has been directly involved in bringing peer wellbeing support to Australian carers of children with rare epilepsies through the Angel Aid caregiver wellness program.
Angel Aid, run by Raregivers, Inc., provides specialised wellbeing support for carers in the rare-disease community. Their six-week online group wellness retreat was adapted for the Australian rare-epilepsy community and piloted with families like yours.
The programme was co-designed with a multidisciplinary team and evaluated in a peer-reviewed research study led by SCN2A Australia's Director, Kris Pierce, published in the Orphanet Journal of Rare Diseases (2025). One participant put it simply:
The Angel Aid programme offers:
- A structured six-week online group wellness programme
- Tools for self-care, resilience, and emotional wellbeing
- Connection with other carers who genuinely understand
- Flexible, online format accessible from anywhere in Australia
Siblings
Sibling support.
Brothers and sisters of children with SCN2A or DEE often carry their own particular experiences, of worry, of missing out, of growing up quickly, and also of deep love and understanding for their sibling. Sibling wellbeing matters, and it is easy to overlook.
SCN2A Australia can connect families with sibling support resources, including:
- Sibling support groups run by disability organisations
- Children's books and resources for explaining disability to siblings at different ages
- Counselling support for siblings experiencing anxiety or grief
Siblings Australia, siblingsaustralia.org.au, provides resources, workshops, and connection specifically for siblings of people with disability or chronic illness.
Relationships
Looking after your relationship.
The strain of caring for a child with a complex medical condition on couple and family relationships is significant and is often not discussed openly. Many families experience increased conflict, emotional distance, or exhaustion during periods of high stress.
If you and your partner are finding it difficult, relationship counselling through Relationships Australia (1300 364 277) or a private couples therapist may help. The Carer Gateway can also assist with relationship support as part of its broader offering.
There is no shame in acknowledging that your relationship needs attention. It is harder to care well when the foundations are strained.