Mason was diagnosed with epilepsy around 2015 and experiences absence seizures, eyelid myoclonia and tonic-clonic seizures.
“For many years, Mason had a hand waving ‘tick,’ which had been put down to a behavioural tick. We were very lucky that I had a personal connection with her paediatrician who had been to a conference on paediatric epilepsy in Sydney. (She had) listened to a speaker who showed videos of children with similar behaviour and asked me to explore EEG and a referral to the Royal Children’s Hospital Melbourne. A diagnosis followed, and our world changed.”
As Mason grows older, epilepsy has begun to impact her independence significantly.
“People treat her differently, and while well-meaning, it becomes restrictive on her ability to live her life independently. Mason worries she won’t be able to achieve her milestones, such as accessing her license or ever living alone. Mason’s mental health has taken a hit over the years, but with the wonderful intervention of her psychologist, she is working hard to manage her anxiety.”
Mason experienced a rough 2022, with a rapid increase in seizures, and changes in medications brought a new set of challenges. About to commence Year 9, the fatigue and brain fog resulting from some of her medications, along with diagnosed learning difficulties, means that every day is a challenge. Despite this, Mason gets up every day and has another crack. A lover of the outdoors and a passionate Cats footy fan, Mason plays AFL for the local girls’ team. She is also a member of the school Pipe Band as a highland drummer.
“Mason has advocated for herself incredibly well and managed to get herself on some amazing trips and experiences through school, not without an uphill battle first.”
The Epilepsy Foundation has assisted Gretel with education, training and advocation for Mason, including providing direction to help Mason’s school become an Epilepsy Smart School.
“More recently, I have been made aware of the Epilepsy Foundation through education and training on offer to our family, and assisting me in advocating for Mason in her school environment.”
You and your organisation can help support children like Mason by participating in Make March Purple.
All proceeds will be donated to support services for Australians with epilepsy.
Visit: epilepsyfoundation.org.au/purple
