Maria met Matt 18 years ago in Sydney. The two were friends for years before becoming a couple and eventually marrying in 2014. Throughout their time together, Maria and Matt enjoyed travelling, spending quality time with family and friends, and immersing themselves in something Matt held close to his heart – music.
Sadly, on 23 March 2023, Matt was lost to SUDEP at the age of 41. This October marks his and Maria’s nine-year wedding anniversary.
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Matt was diagnosed with epilepsy at 12 years old after having a cyst on his brain as a baby. He experienced absence and tonic-clonic seizures, only three of which were witnessed by Maria during their marriage.
A massive NRL footy fan and loyal Dragons fan, Matt worked at the Star Casino as a Hotel Operator. His true passion, however, was always music.
“He played the keyboard beautifully. He wrote songs, produced music and played in a band. This was his biggest passion and he had so much yet to do and accomplish with his music.”
Despite living with epilepsy for the majority of his life, Matt refused to let the condition define him. Though his memory was impacted. On the other hand, for Maria, her husband’s epilepsy was constantly on her mind.
“It did impact my life as I was constantly worried about him, especially after he would have a seizure and still go to work. His memory was not the best and he would repeat himself at times.”
Prior to meeting Matt, Maria knew little about epilepsy and SUDEP. She recalls reading an email which contained information around SUDEP, which did initially peak her concern. However, after reassuring herself that Matt didn’t really have bad seizures, she believed he wouldn’t be at risk.
“Now I understand that uncontrolled seizures can lead to SUDEP. SUDEP can happen to anyone and epilepsy needs to be spoken about more. Not many people know about it enough and it’s an invisible battle.”
The Epilepsy Foundation has been able to provide support to Maria and Matt over the years, particularly when they have had questions about epilepsy and Matt’s seizures.
“When we had questions, we would ring and get the support we needed. They have been wonderful before and after Matt’s passing. So grateful.”
Maria is participating in this year’s Walk for Epilepsy in honour of Matt. She hopes to encourage others to talk about epilepsy and SUDEP, and to raise funds to support research for SUDEP.
“I want to remember Matt and to raise awareness for epilepsy and SUDEP, especially to get people talking about it and raise the money for research as this is so important. No one really knows why this happens. We do not want to put too much fear into the people who suffer with epilepsy as they deal with enough fear on a daily basis. But we need people to be aware that this is real and fatal and unfortunately can happen to anyone. This is why more research is needed as the sudden loss in just unbearable.”
Maria has already surpassed her fundraising goal of $5,000 and raised just over $6,000.
This SUDEP Action Day, Maria wants people to seek to learn more about SUDEP and donate to support people living with epilepsy and SUDEP research.
“Be educated, talk about it and donate for more research.”
Learn more about SUDEP by visiting sudep.org or donate to support people living with epilepsy by visiting fundraising.epilepsyfoundation.org.au/donation
