Australian findings into patients with developmental and epileptic encephalopathies, the most severe group of epilepsies, highlight the significant burden and responsibility of the condition on parents and carers of children with DEEs.
“Our research has led the way for better treatment, care and management of children and adults with the most severe epilepsies known as DEEs,” University of Melbourne paediatric neurology chair Professor Ingrid Scheffer said.
“World-leading researchers here in Australia are working tirelessly towards a common goal of one day — a cure.
“However, while the future is brighter for people living with a DEE than ever before, there is a huge disparity in support received by the carers, parents and families, particularly of children and adults with DEEs.”
Research shows the majority of parents and carers of children with DEEs, mostly mothers, report constant anxiety, poor mental health, financial burden and restriction on social life as a result of the responsibility and burden of their child’s highly complex care needs.
Just over 55 per cent of carers say they had accessed a mental health or family support service for the parents or siblings of children living with the condition.
“When a child is diagnosed with a DEE, their families experience understandable grief and need intense and ongoing support as the disease evolves,” Prof Scheffer said.
“Parents and families quickly turn into full-time carers, from learning all about their child’s condition to working with a multidisciplinary team to provide highly specialised care.
“This takes a significant toll on parents and carers and highlights the need for considerable ongoing support.”
At just three years old, Ivy was diagnosed with encephalitis — an inflammation of the brain and spinal cord that can trigger seizures.
Ivy’s condition deteriorated, leading to an induced coma and 15 days in intensive care.
After five weeks in hospital, Ivy was discharged and slowly regained her ability to walk, talk and eat.
But 10 months later, she had her first seizure.
Ivy was diagnosed with occipital lobe epilepsy with focal symptoms, likely caused by encephalitis.
Her seizures are unique — she experiences hallucinations, seeing things like ‘penguins with an ice-cream stand’ or ‘a face vomiting up a brick’.
Initially infrequent, her seizures became daily, sometimes exceeding 10 in 24 hours.
Ivy’s epilepsy is rare and resistant to medication, making treatment challenging.
Despite this, she has not let her condition stop her and is an ‘amazing’ and ‘very resilient’ child.
Liz, her husband and Ivy’s siblings, Harrison (16) and Lily (14), have adapted as a family and work together to support Ivy’s needs.
As a parent, Liz knows that through the ups and downs, giving up isn’t an option.
“You have to keep running. Being far from care, I know I need to drop everything and look after Ivy or drive to our appointments nearly two hours away,” Liz said.
By sharing Ivy’s story, she hopes to raise awareness of the challenges presented by epilepsy and highlight the dedication of those who support their loved ones every day.
And this March, ‘Purple Heroes’ are banding together.
Australia’s epilepsy community is coming together to ‘Make March Purple’ and raise awareness and funds to support the ‘unsung purple heroes’ in epilepsy, including parents, carers and wider families of children with DEEs.
“Caring for a child with a severe epilepsy is often a 24/7 responsibility,” Epilepsy Action Australia chief executive and managing director Carol Ireland said.
“This can be isolating, leaving parents and carers with little to no time for themselves when it comes to work, relationships and the overall management of everyday life.
“This year, we want to recognise and celebrate our purple unsung heroes — the Australian parents, carers and families — who truly deserve all the support and recognition for the important role they play for their children with DEEs.”
Epilepsy Action Australia and the Epilepsy Foundation encourage everyone to be a purple hero and take on a purple challenge to show support.
All funds raised are donated to development and delivery of vital epilepsy support services, education, training and research.
To find out more about Make March Purple, visit makemarchpurple.org.au
If you need support, contact the National Epilepsy Line on 1300 37 45 37 or the National Epilepsy Support Service on 1300 761 487.
