Imagine watching your baby daughter scream in pain from debilitating seizures, every single day – and discover there’s almost nothing you can do to help her.
Luella was diagnosed as a tiny baby with a rare and severe form of epilepsy called Infantile Spasms. Erin, Luella’s mum, has selflessly shared the terrible challenges they’ve faced as a family and tough decisions they may have to make in the attached letter. It’s harrowing reading and my heart goes out to them.
It also makes me determined to invest in more research and specialist interventions that will lessen the suffering of children like Luella – it’s one of the most important things we do here at Epilepsy Action Australia.
We need your help if we want to help give children like Luella a better life and a brighter future. Your support today will help us support the development of new treatments that could be the breakthrough we need for severe forms of epilepsy, like the one Luella has.
And we also know that the earlier in life we can intervene with education and specialist resources for families, the better the outcomes – which is why we focus on giving children like Luella the best possible start in life.
Even those children who don’t have devastating forms of epilepsy may have problems with verbal processing, word finding, comprehension, memory, and planning and organising. There may be side-effects of medication, and children with epilepsy often miss a lot of school. On top of this, the psychosocial impacts can affect the whole family.
Sadly, for around a third of children with epilepsy, the situation is even more severe.
Like Luella, they are considered to have ‘paediatric drug-resistant epilepsy’ which means there are no truly effective medications to help them. Children like Luella are at grave risk of poor cognitive and intellectual outcomes, emotional and behavioural problems and even an increased risk of Sudden Unexpected Death in Epilepsy (SUDEP).
Luella’s form of epilepsy can cause severe harm to a young developing brain. It’s why, at three and a half years old, Erin and her husband, Dave are faced with the difficult decision to let their baby girl undergo a major brain surgery to remove the entire left side of her brain.
As well as our research efforts, we want to be there for families like Erin’s every step of their journey with information, education and – sometimes most important of all for struggling families – someone who will listen, who understands what they are going through.
Living with a child with epilepsy can be very isolating. It can also be complex and confusing. Our National Epilepsy Line is a tremendous service for families like Erin’s. With just one phone call from anywhere in Australia, we can connect them with a specialist epilepsy nurse who can discuss their child’s individual needs and create a personalised care plan.
We support families with tools and information, and someone to talk with through tough times. We make sure they know about their options for those with complex epilepsies to access Specialists and Comprehensive Epilepsy Clinics to ensure correct diagnosis and find the best treatment options. And we can provide essential education for important people like carers and teachers, so the child and their family have a solid network of support and understanding around them.
Epilepsy can be lifelong – and for families, like Luella’s it can be devastating. We’re doing everything we can to support families with epilepsy and to drive momentum for new treatments that could change the lives of children like Luella.
Please read Erin’s letter below and give what you can today. Thank you for your support.