Epilepsy is one of the most common and serious brain disorders globally and yet there is a great lack of knowledge and misunderstanding about this brain disorder, and how people living with epilepsy go on with their daily living.
Epilepsy is a disorder of the brain which takes a form of recurring seizures, and over 800,000 Australians will be diagnosed with epilepsy during their life time. We spoke with Alessia, who is the Mum of Living My Way Member Alex, who was first diagnosed with epilepsy at 8 months of age.
“It is a hidden disorder disorder and that is the problem. You don’t see it if you look at Alex, you don’t see understand the challenges he is facing inside him.”
Alessia and her husband Arthur have 2 other sons, both in their 20s, one of which has Autism. This positive and close-knit family have been determined to ensure Alex and their whole family experience a life of normal opportunities. Alex has always maintained a positive attitude towards every challenge!
“Alex wants to do what everyone else is doing.”
The journey for Alex and his family has been full of many twists and turns including a period of six years where Alex did not experience any seizures, along with major surgery and time in hospital to help improve his epilepsy.
“When we were told his epilepsy has come back, I couldn’t believe it and it’s been a roller coaster ever since.”
During his various breaks in seizures, Alex was able to fulfill his love of sport and life in general. He has often defied the odds with his recovery from many major medical procedures.
“We were able to let go of the rules a bit and try to give him some normality and independence to do the things a normal 18 year would want to do.”
Alex has always enjoyed sport and participated with great enthusiasm.
“Rugby league was his original passion, but he had to stop when he was about twelve because of his epilepsy.”
Alex attends high school in Kogarah where he receives learning and occupational therapy support and has the flexibility to adjust his hours as needed. School life has not been easy but throughout their journey, Alessia has been determined to help Alex pursue his love of physical or sport activities, both in and out of school.
“I pushed the point to say, look, I’m not asking for contact sport but just something to get him moving, and interacting with other people, so they did put him in.”
Late 2022, Alex had great success competing at the Catholic Schools Multi Disability competition where he won four medals including three gold and one silver in the field events.
Alex also enjoys weekly outdoor personal training sessions and has recently lost a significant amount of weight. “It’s good for his body and mind to go out and be active in the outdoors.”
Alessia shared the challenges for her family, including the vital need for close monitoring.
“He needs to be continuously monitored. So as a couple, it’s very hard to go out. One of us always needs to be with him so he can be watched.”
In the coming months, Alex and his family are planning a special holiday to Greece where they will attend a family wedding. “The travel is going to be a challenge, but we have to do normal things, and can’t live in fear as life is so short.”
Alessia does worry for the future and what lies ahead for Alex but is both positive and philosophical. “Alex is very driven and wants to succeed. He wants to pass his exams and do well, and his attitude is fantastic.
Alex is interested in so many things, and you can’t live in fear, as life is so short.”